My thoughts on...

It's been awhile since I've written, but it's time to dust of the ol' blog with the latest atrocity rearing its ugly head on the internet: "The Autism Acceptance Project" (Not to be confused with the original Autism Acceptance Project, which one of the finest organizations devoted to autism on this planet, in my opinion.) Estee Klar, the founder of the original Autism Acceptance Project has much to say on her blog about the whole thing.

I commented on the blog of Ms. Zalzal, the creator of the imposter site, but it will likely be deleted, so I'm putting it here where only I can delete it (neener, neener):  

I have spent many years speaking with and working alongside people on the autism spectrum and their parents (Parents being without an apostrophe because it is plural). What I have found is that non-autistic parents have no more of an idea about what living with autism is like any more than professionals do. Why? Because they are not autistic! Many parents will freely admit they have no idea what their children are going through. They just know what it's like being a parent. Just because you give birth to someone, it does not automatically mean that you know what it's like to be your child. That goes for any parent, not just a parent of someone on the autism spectrum. I'm married to a person on the autism spectrum. His parents still don't know squat about it! 

Experts without autism are even less inclined to know about what autism is like. Sure, they have their pet theories, but do they really know what it's like? I have met two out of hundreds of professionals that I would even come close to saying have an idea about autism for what it really is. Most of them are making lots of money shilling their quack theories about. There's wisdom in the saying: "Never trust anyone who calls himself an expert. An ex is a has-been and a spurt is a drip under pressure".(Don't even get me started on movie stars and celebrities who think they're experts on autism because they have kids on the spectrum!) 

It seems to me that you want to focus on the negatives experienced by parents, which is hardly acceptance of autism, in my opinion. If that's your goal, may you get whatever gratification you seek from it, but please don't call it "acceptance". I can think of far more appropriate adjectives. "Abelism" and "more senseless whining" come to mind. I'm not saying autism is fun and games all the time. Like everything, it's got its dark moments. It also has its amazing moments too. Most parents I've spoken to will agree. 

Also, The Autism Acceptance Project (TAAP) is already a registered organization in Canada which has always consulted with people on the autism spectrum and even has people on the spectrum running the organization. (Something more organizations should start doing, IMO) Using their name and acronym is not only unethical, it is illegal. Using it to promote a pity party for parents is just obscene. 

If you are truly bent on bringing this "realistic picture" of autism to the world, why not have a look at any number of the major organizations out there? They're making tons of money on negativity while completely (and often blatantly) ignoring the opinions of those on the autism spectrum. You're not doing anything new. You're jumping on a very old and well-used bandwagon. One that I hope will lose its momentum very soon.

Two steps forward.... one step back. It's so tiresome.

One of the most awesome parents I have ever met (Estee Klar) was discussing gifts on her blog recently. (https://www.esteeklar.com/2011/12/23/keep-it-simple-over-the-holidays/comment-page-1/#comment-23923)

The subject is what to get an autistic child as a gift during the Holidays. People have been asking her this with regard to her 10 year old son. (This should be a no-brainer - get the kid what he likes. Well, duh!) However, when it comes to autism, people seem to be focused on toys and gifts that are therapeutic or will bring out some sort of "normal" response.

Estee is preparing to get rid of a lot of these therapeutic toys and such that have been accumulating in her house and she wants things to be simple. Yay! I love this quote: "As I divest the things that we’ve accumulated over the years to clear out our heads, I am also trying to make room for creativity. We are so eager to see a typical response in our autistic kids that we buy, buy, buy. We don’t believe that boredom for the autistic child is as valuable as it is for the neurotypical one."

This particular blog entry resonated with me, because I have seen people ask this question over and over again on mailing lists, newsgroups, etc. and it drives me nuts. "What therapeutic thingie should I get for my autistic [insert relation here] for [insert special occasion here]?" Aaaarrrgghhh!

I started writing this post as a comment, but then thought it would make a better blog post because it got kind of long. I left a quick comment along these lines, but this post is more in depth.

When I was a kid, my parents would ask my brother and I what we'd like for Christmas and birthdays. Dad would bring out the "Consumers Distributing" catalog and let us pick out what we liked, within reason, of course. (Anyone in Canada remember Consumers Distributing? Best store ever! You pick what you like in the catalog and then go pick it up. No browsing, no crowds, no fuss!)

Then, when said birthday or holiday came around, we'd open our presents and, lo and behold, there'd be something we *wanted*! Dad would even get creative and buy something alongside of that item that he'd know we liked which just made the day even better! I cherished those gifts and either used them until they were unusable or I stall have them.

I'm very grateful that I was never once given a toy or gift that was supposed to be therapeutic. Ever. As a result, my parents never had a basement or attic full of toys we'd never play with and I was never given the idea that my life should suck on a special day because I was diagnosed with something. My parents quite simply honoured our wishes. My mother had a rule with toys: "if it's not inside your room and you are not using it anymore, it's gone." Therefore, no clutter in the basement. My dad's stuff on the other hand... well it's all accumulating nicely in the basement. But that's another story about pack-rattery for another day (or not).

So, what to buy an autistic child for the special occasion du jour? I often find myself asking the question: Why not buy stuff kids *like* rather than things that are supposed to be therapeutic? Shouldn't birthdays and Christmas be *fun* instead of therapy?

Note to professionals and other people who say autistic kids don't enjoy their birthdays or Christmas: this may be part of the reason why.

Not to mention the noise and stress that often come with these occasions. Christmas is it's own special breed of stressful for just about everyone I know, but a child's birthday should be fun by his or her standards. If those standards are a quiet day spinning a wheel on a toy car, then so be it! It's his or her day after all! Would anyone out there want to be dragged into something they absolutely *hate* doing on their birthday? No. That would be rude and discourteous, wouldn't it?

I for instance, eat very carefully every day - no trans fats, no meat, no additives, etc. But on my birthday, I want cake! And not just any old cake, but black forest cake with tons of chocolate and whipped cream and raspberry filling (I'm not a fan of cherry)! Why? Because it's the one day of the year that is truly mine! It won't kill me to enjoy myself on my terms for 5 minutes. I'll be back to my usual boring bland food the next day and will not want to see another cake for another 365 days. No harm done.

I have not yet had anyone try to curb me from doing something I enjoy on my birthday and I would never think to compromise someone else's enjoyment on their birthday either, because that would be discourteous and (dare I say it?) just plain rude. Is it not a social rule that a birthday should be enjoyed by the person and the people throwing his or her party should be accommodating to what the birthday person likes? I know it is because it got drilled into me ad nauseum when I was a kid.

This begs the eternal question: Why do the social standards of common courtesy and politeness not apply to autistic people? Why should they have to suffer on a special day just because someone else thinks it's good for them? (This is just one of many double-standards that society foists upon people on the autism spectrum...)

People wonder why it's hard for autistic people to learn social skills. When someone on the autism spectrum is forced through behaviour modification (or whatever) to follow a set of social rules but those same social rules do not have to be observed by others toward him or her... what message is that giving the autistic person? What is the autistic person going to think? "Why the heck should I be doing all of these things when people can be rude, condescending and socially inappropriate with me? It's unjust for starters and makes no logical sense. Therefore, why should I do this? To heck with that!"

Another note for professionals trying to teach social skills: Autistic people of all ages know and understand a double-standard when they see one and they don't appreciate it.

A kid needs to just be a kid once in a while. From what I've seen many autistic children are quite imaginative and don't often require the props (toys) that most kids need in order to help them imagine things or have fun. Just because the average child lacks the imagination to entertain him or herself without toys, it does not mean that that those who do have the imagination to entertain themselves without props should be constantly punished with therapy or forced to believe that they are "wrong".

That's not to say that all other children lack imagination: How many kids play with the boxes their toys come in more than the toys? (Think Calvin from the "Calvin and Hobbes" comic strip with his transmogrifier - a big cardboard box.) That's got to say something about kids and imagination!

Why squash innate and powerful imagination because an autistic child does not live up to what I call the "corporate (sub)standard of play"? Why drag the child down and then end up with a basement or attic full of expensive and boring things that are just a waste of valuable time and money to begin with? It makes no sense to me.

Which professional set the standard for play anyway?

Life for a kid should not be 24 hours of therapy a day. It should be fun at times... on his terms. Just my thoughts on this one.

I love the quote from Estee's blog: "Our children come to us with a deep destiny — here again, some say spirit — that needs to be heard. It must be honored.”

Their personalities, likes and dislikes must also be honoured, IMO. ALL children are human and humanity comes with individuality that must be honoured, nourished and respected if it is to thrive... a fact many people seem to neglect.

The moral of this story is: Social rules (should) apply to everyone.

Two things that have bothered me about the DSM definitions of autism spectrum conditions are: lack of empathy (or, as some people say, lack of emotion!), and lack of creativity. I will get into creativity some other day, but today I want to focus on empathy and the common notion that folks on the autism spectrum do not have it. Au contraire, mon frere!

Part of the reason I always "withdrew" or did not "socially reciprocate" was because people seem to radiate emotions like a blast furnace. I've talked to many others who say the same thing. I feel emotions too much!

I recall watching an animated movie when I was about 7 and bawling like crazy at the end, but have no idea what it was called. I just remember that it was a fantasy one and these two beautiful magical beings turned into what looked like dandelion fluff and floated away on the wind, thus removing them from the world forever. It was like a kind of death. It was so beautiful that it moved me to uncontrollable tears and my dad would not let me watch TV for a few days afterward! Back in 1994, I saw Loreena McKennitt perform and was also moved to tears when I heard her sing because it was so beautiful.

If I got too happy, I'd have a panic attack because the rush of my own emotion was too much for me to bear. Any emotion was too much in high doses because my body and mind were in red alert all the time. My senses... all of them, including the empathy, were heightened to the max all the time. Imagine experiencing wildly intense emotions all the time! It's not fun!

As a result, I learned to control my emotions and suppress them. Being raised in a traditional British household helped me because I was taught to maintain the famous "stiff upper lip". It was the best thing I could have learned! I learned to block the emotions of others too, but it was always hard. I tried to emulate Mr. Spock from "Star Trek" because he seemed to have the control of emotions down and look how successful he was!

Unfortunately, being like Mr. Spock in our world where people expect you to be emotional all the time does not lead to success!

To the outside world, I was this emotionless person who could not feel emotion or reciprocate it. If only they knew what I was doing to protect myself from going insane from the intense emotions that assaulted me every day of my life! If only they'd get it now!

Not only do I feel my own emotions too deeply, I feel other people's emotions too deeply as well. When I was a child and then later a teenager, I would almost get high off of being in a crowd of excited people. Rallies, protests, sports games... it didn't matter what the purpose of the crowd was; I'd get this weird rush of emotion that felt like euphoria.

I could sit on a bus and tune into the emotions of others and basically tell what was going on with them that day. I knew when people were rushed, upset, feeling awesome, etc. I find it too difficult to handle now and can no longer take public transit without having a panic attack because of all of the intense emotions in one tiny, packed place! (I can't be on an airplane either for the same reason.)

At funerals, I find that I have a hard time, not because a person has died, but the influx of negative emotions radiating off of everyone in the room. It's awful! I am always happy for the person who has passed away because they have completed their life's journey and they are free from the enslaving emotions and such of our world.

I've studied Buddhism and many other world religions and find that being in this world is indeed Samsara: The cycle of birth, misery, suffering and death. That is what the world is to me: suffering and misery because of what I feel from others and inside every day.

I deal with it, though, and carry on because I know that one has to ride the wave of human emotion and irrationality in order to succeed. I've succeeded because of I've learned how to use my ability to feel other people's emotions to "work with it" and therefore succeed. I can tell if someone's having an off day and I'll have to be extra careful, or if someone's having a great day and what I need will be easy to achieve.

Humans seem to depend on the emotions of others to get what they want in this world. If they apply for a job, it is the interviewer's whim that will either get them hired or not even considered. I've learned to work with the emotions and feel of a person to mold my personality to their needs like a chameleon changes colour to blend in. If a person needs something from someone else (and we always do!), the person must be properly attuned to the person or people who the person is depending upon.

Social skills are simply that: changing your emotional "colour" to blend in with the emotional "colour" of those around you. You use your ability to sense others' emotions to console them when they're sad or be happy for them when they're happy.... or stay clear away from them if they're angry! That's what I've learned and that's why I've succeeded in my life. I learned to use the emotions of others to get what I want and to bring joy into my life.

I manage many people in my current work and can attune myself to all of them in a matter of seconds after meeting them for the first time. I know their names from memory, something about them and what their emotional climate is. Most managers cannot do that. Some of my staff have even said it's kind of creepy how I just seem to attune myself so quickly to others.

Many of them have commented on how "laid back" I am and how nothing seems to bother me. It's still hard for me to handle the emotions, but I've learned to buffer the emotions consciously since that doesn't seem to happen unconsciously like it does with other people. I don't have the "automatic emotion shield", so I've had to make one and use it when I need to. I've learned how to take strategic "time-outs" to relax or take a breather.

That's the key to success in this world, in my opinion. Learning to control and then using that heightened empathy that one on the Spectrum has to navigate and work within the social parameters of this world.

Humans are emotional creatures. We are human as well, and no different, except that we experience emotions much more than the average person. It can be our downfall or our strength.

I choose to make it my strength.

I was reading Estee Klar's blog this morning and came across a wonderful post called "Living Without Question"

This quote really spoke to me: "if autism and autistic people were not as targeted in the media as “abnormal,” if we were truly a more accepting society of all forms of human, we might not have to live our lives constantly having to answer how we exist and how we came to be."

The context Estee is using in the blog post is that she gets questioned at inappropriate times about her son's autism every time she takes him anywhere... particularly gruelling medical appointments where she really needs to focus on her and her son's well being and not the questions of well-meaning people.

However, the post spoke to me about labels, particularly the label I got slapped with at the age of 2 and a half.

I especially like this comment: "if autism and autistic people were not as targeted in the media as “abnormal,” if we were truly a more accepting society of all forms of human, we might not have to live our lives constantly having to answer how we exist and how we came to be."

To play devil's advocate for a moment, it might be good to look at what labels can do to some people on the spectrum in adulthood (namely me):

The label works for some if it helps them get needed services or even peace of mind. I totally understand that. In one commenter's case, the label helped people to understand her son's strange behaviours and treat him with more respect. Some people have gone their whole lives wondering why they are so different and why they were shunned so much as children. The label reassures them that they are not alone and they are not a single target...that there are others who have similar issues and that they are okay.

That is wonderful if the label works to get the needed help or reassurance

However, I for one am not happy with the labels or the statistical norm because of my own situation. In my case, because of society's need to put everyone with a label into the same category and this diagnosis, I have to use an alias when engaging in any advocacy activity for fear of losing my job. (See my previous post about aliases for the dirty details).

Autism itself has never been a huge problem for me compared to society's way of dealing with that label. I look and act just like anyone else and I get along just fine. My problems are purely physical and I've taught myself to deal with those (because behavioural therapy does not fix physical problems). My medical issues were ignored all of my life because of that label. I almost died because of that label.

Many would argue that I'm just a high functioning person who's just trying to mess it up for those that actually need help. I argue that, yes, I'm high functioning, but I don't qualify for services, so I need to make a living. I have to work. I have to get by in this world that has such a negative view about autism, therefore I have to hide who I am.

I have to work three jobs just to pay my mortgage and bills because my hubby is still out of work. I'm tired, annoyed and that "label" doesn't help me put food on our table or a keep a roof over our heads. It is a detriment in my case.

Once we grow up, we don't get the same awesome medical services the kids seem to get. That all ends when we hit the age of majority. I noticed that when I turned 18.

The "label" also can mean shoddy medical care for an adult who needs medical help and not just more behaviour therapy. I see it every day on mailing lists, etc. One autistic person I recently met online vomits constantly, every day... cannot keep food down, but has also not been taken to see a doctor by the people at the group home. This person might even lose the job that pays for things there. Is this normal? Apparently, it's just "bad behaviour", but what if it's cancer? That attitude nearly killed me 11 years ago. That's why my doctor doesn't know of my diagnosis. I actually get proper care now! *S*

The biggest problem, IMO, is society's way of dealing with things that they don't understand. We'd like to think that we live in a world that is more accepting of differences in people, but we don't. There seems to be this driving need in society to label and make every behaviour or every personality difference something pathological instead of what it is: different.

Through today's supposed "advocacy" and "acceptance", we end up with even more discrimination, intolerance, and being "written off". I've seen plenty of ignorant advertising campaigns that are meant to raise awareness (the "I Am Autism" video, the ransom notes, etc.) I worry about the autistic children whose names are all over the internet or the news with the label "autism" attached to them. They're doing okay now because they've been supposedly "cured" by the latest and greatest expensive therapy that only former Playboy centerfolds can afford without going broke. What happens when they grow up? What happens if they turn out ok and need to work for a living because they don't qualify for services? They'll be in the same boat I am. The "A-word" will be like the red letter to them: a badge of shame that ensures that they will be discriminated against or written off.

Sometimes, I think life might have been better before the 19th century for autistic people... or maybe not. Who's to say? There was not the same driving need to be part of a statistical norm. If you were good at something, not many people cared if you weren't the social butterfly who couldn't speak very well. There were no flickering lights, toxins in foods, sounds of vehicles rushing by all the time, etc. to cause a person to react in a self protective manner.

Are the "behaviours" we see with autism really the issue or are they a reaction to our world, the way it is now? Is the pathology really in there, or is it the way society holds people up to a standard? I would love to see more research done on that. There is an interesting issue of Ethos that is downloadable by the public - there are some interesting anthropological looks at autism: https://www3.interscience.wiley.com/journal/118902560/home (Thanks to the individual who tactfully pointed out that the link was not working. This one does)

I'm not sure that I agree with all of it, but the views are very interesting if nothing else. It makes people look at things from a different perspective which I believe is always a good thing. You don't have to agree, but it doesn't hurt to see things from a different angle either.

All I know is that it is not so great to have this diagnosis and be doing very well for oneself right now in this supposed "age of autism".

Over the past little while, there has been some uproar on a number of blogs and autism-related email lists and newsgroups over some conflicts that I am not really qualified to comment on because it is too complicated for me to understand, nor do I want to be directly involved. (Like my previous post said: the conflicts are not helping)

However, some very interesting conversation has arisen about the nature of pseudonyms and anonymity on the internet. This is a topic very near and dear to my heart, so here are my thoughts on it.

I can understand somoene's need for anonymity because I have had to be very careful about this in my own life. Four years ago, I had to spend a lot of money to completely change my legal name because of the association with autism that my previous name had.

When I was a teenager, my mother had told me that the news had wanted to do a story on the family when I was a kid. Mum refused because our last name was unique and she didn't want me growing up with the A-word (autism) hanging over my head. She also didn't want her and Dad to be associated with that word either.

The story was supposed to be very positive... how could this possibly be a bad thing???

I never really understood the answer to this question until I was 28.

In 2003, I was a year into an excellent job in a new career field and was in a good position for promotions and such. My career aspirations have always been in a managerial and professional direction because that is the kind of person that I am. (And perhaps that is one of the things I was told I'd never be able to do being on the autism spectrum!) I was in a long term relationship, with the possibility of becoming engaged and things were looking up!

I attended a fundraising dinner for a local autism society and, being a well-dressed and very articulate person on the spectrum, I became instant "news-fodder". A representative from one of the major local newspapers did an interview and a local TV news reporter interviewed me for the 11:00pm news which would be aired that night. Both interviews were very positive; focusing on my strengths, hope and potential. I was very honoured to have been interviewed.

My father saw the 11:00 news that night and absolutely freaked! Did people at work know about my "condition", he asked? Well... no. "Well, now they're going to know," he said. "Do you have any idea of what you have done?? Do you know you could lose your job over this??"

"If they fire me, I'll just sue the pants off of them!" was my very naive reply.

Fortunately, people at my workplace tended to be early to bed or not too interested in what the TV news had to say, so no one of any importance other than my dad saw the interview.

The next day, I got a call from the newspaper reporter wanting to ask some more questions. I answered them and recalled my father's words. I asked the reporter where this article would be placed. She assured me that it would be somewhere in the Health and Lifestyle section of the Saturday paper because it wasn't a huge story. Well... that would be ok, I guessed, since no one ever reads that section anyway! A fellow came and took some nice pictures and that was it for about a month.

In early April of that year, I went to pick up the paper from the front step and found a huge, full colour picture of me on the front page with the headline being about autism!! Holy crap!!! This was not the middle of the Health and Lifestyle section on the weekend! This was the front page on a weekday... everyone and their dog would see this!

Lesson number 1: Don't ever believe a reporter when they say something will be published in a certain part of the paper. The editor makes the final decision and autism sells newspapers.

Lesson number 2: If you have anything to lose, even if it seems like the exposure will be positive, just say no to publicity via media.

I went to work feeling like a pariah. The initial response from everyone I ran into was very positive: "you achieved so much, good for you!", etc. I thought maybe this wouldn't be too bad until I found that my boss all of a sudden did not think that I was capable of being a manager, when the week before, I was next in line. Some people at work started asking if I could count cards and other things that were seen in the movie Rain Man.

A few months later, I was on the news again to give an insider opinion on a crime committed by someone claiming to have Asperger Syndrome. Despite successfully working on a major project, my contract was suddenly ended and I was at risk of losing my job at the company I was a contractor for. I was sent to cover for someone on one of our other contracts and then told that "there was no work for me" and I was given two weeks notice.

I looked for jobs and never got a call from anywhere that I applied at. Just for a lark, I decided to use a different first name and applied for the same jobs with the same qualifications on the resume. The only thing different was the first name (I used one of my middle names, so it was still a 'legal' name). All of sudden, I started getting calls for interviews!

Fortunately, the temp contract that I was assigned to turned into a full time one and I ended up working for the company for over five more years... but stuck in admin positions. Even my family doctor started treating me differently when he found out... all of a sudden I was stupid and should be on antipsychotics.

A year after I got married and we were buying our house outside of the city I was born in, I decided to change my first and last name legally. It cost a lot of money to do, but since then, I have changed jobs, gotten a management position and have gotten very involved in the new town that we moved to. I do not want anyone to find out that I was diagnosed with AS at the age of 2 after what happened to me the last time.

Here's something parents rarely hear from their kids: "Yes, Mum and Dad, you were absolutely right!" And they were. I wish I'd listened!

I am now involved with an autism society in my former hometown, but any public information about me lists me as a board member and a psychology student with a special interest in the subject. Just last week I was asked by a staff member to do an interview on the news and I said that I was very, very uncomfortable doing that. I would only be a representative of the agency quoting stats, but still I was leery. Luckily, it didn't happen, so I was off the hook. I'm still doing speeches and some advocacy work because I believe in the cause, but I have to be very, very careful about what information is put online because of the past.

Perhaps one day, I'll be in a position or doing work where it will actually be a benefit that people knowing of that diagnosis will actually be a benefit and not a detriment. I feel like I have to live in fear, which I don't like. Maybe one day that will change. Until then, I must err on the side of caution and maintain vigilance. Name changes are expensive and so is moving to a new town!

There has been a lot of talk about pseudonyms due to the uproar about ASAN and one member's full name being posted on a mailing list and that person asked for that post to be removed. This led to accusations of that person being possibly untruthful or deceitful. Why be a part of a large, well-known advocacy group, but hide behind a pseudonym?

Publishing a full name can cause a lot of trouble, especially when someone did not ask for their name to be published. I know this from personal experience and would ask that people be cognizant of others' privacy, Fortunately, the internet allows us a voice without necessarily revealing our identities. Some unscrupulous folks take advantage of this and use it to be a troll or cause harm. Some of us have something to say and good things to do, but do have to be very careful. Some of us are in the closet and people generally try to avoid "outing" a person. It's sad that it has to be that way, but that's the way it is.

I don't want to lose my job, but more importantly, I can't afford to lose my job! Why? Because right now, I am the only one with a job in my household. My husband lost his job in early 2009 and EI ran out back in early February of this year. I only work part time, so my pay only covers the mortgage payment. I'm now working 3 jobs as a result so I can pay the rest of the bills.

If I lose my main job, we could lose our house and all of the things we've worked hard to obtain. I will not let negative attitudes about AS ruin my chances of making a living again.

(Please send any prayers or good thoughts my hubby's way so that he can get a job real soon! Thanks!)

Some may be okay with their name being published because they:

a) have nothing to lose like their only form of income, or

b) it enhances one's quality of life or credibility to have the name associated with a subject such as autism. (i.e.: they can receive services and such because they have this diagnosis, or they work in a field where their being on the spectrum actually lends credibility to their work)

Where I live, a person on the autism spectrum cannot receive services unless their IQ is under 60 (It used to be 75). So, no matter what happens, I will never qualify for services under this diagnosis because mine has been scored at around 135. I don't get tax breaks, credits, services or assistance of any sort... nor will I. Therefore, I have no choice but to support myself and my husband until he gets a job too.

I like being independent and would probably go crazy if I had to put up with the crap I put up with as a child in an institution and the crap that many people I know have to deal with in group homes, institutions and other facilities. I don't ever want to be dependent on someone or be at their mercy. I thank God every day of my life for my independence. My parents probably do too.

In order for me to maintain that independence, I have to work and be involved in my community... which could be jeopardized by being associated with the A-word as I was in the news back in 2003.

Unfortunately, one autism group I am associated with published my name in a PDF newsletter a few years back, so it does show up on Google and other search engines. I've done what I can to ensure that it's buried a few pages down, so it's not readily available, but if someone spends some time, they'll find it. And then what?

That is why I use an alias on lists like this or anything to do with autism. I'm sure others have other reasons.

Does that make me a "low down dirty deceiver"? (Firefly quote!) Some might say yes, but I do not believe it does.

In life, we do what we must to survive. This is what I do, and I'm sure this is what the person from ASAN has to do too.

Even if the exposure is positive, the fallout can be truly devastating.

Someone posted a link to an article in the Huffington Post about Autism and civility. This is another one of those articles that seeks to unite but ends up dividing, particularly when "autism is the enemy". (Read it here: https://www.huffingtonpost.com/liane-kupferberg-carter/autism-time-for-civility_b_521521.html)

Someone I know and respect very well has responded to this article but was banned from leaving a comment, so he posted it on his website. (Read it here: https://www.badour.net/autism/respect-long-overdue.html)

I too wanted to leave a comment, but my comment was way too long, so I've posted it here:

Looking at all the bickering I have seen thus far, I can tell you that no one is going to be of any use to those on the autism spectrum as long as this continues.

From my POV as someone who was diagnosed with autism many, many moons ago and who is an advocate for changing attitudes before we can actually be of any use to those on the spectrum:

1. One must understand the climate of the world of autism, which unfortunately is quite negative for the most part.

• Autism is still relatively new on the medical stage (first written about in 1943) and general medical knowledge of autism seems to have split between the behaviourists (autism is diagnosed by observable behaviour) and the biomedical supporters (I lean toward this but not toward the alternative medicine - I'm more interested in the autoimmune research that is going on right now). Until more is known about autism and the full picture is seen, there will be splits in the community about what is right and what is not.

• Because autism is still so "new" compared to many other conditions out there like diabetes, there is a lot of money to be made on it... and so many people do! Enter the snake oil salesmen with their potentially dangerous claims of cure, the behaviourists who charge $40,000 - $100,000 per child per year to force a child to just "act normal". These folks prey on parents who do what all good parents do: want to help their children and it's sick (in my opinion). They tell parents that they will "lose" their children if they don't sign up for their particular brand of therapy. They tell parents that there is a window of opportunity that will close. They threaten, cajole and scare parents. The parents end up forking out tons of money and perhaps even losing homes and such because of these people. How do these snake oil salesmen sleep at night??

• Speaking of money to be made: Societies use negative language in order to make money (who's going to give money to an agency that says "Meh... Autism's not really that bad..."?). Autism Speaks has not become as successful as it has from being positive or even cognizant of what autistic people are saying!

• Many of us on the spectrum who were diagnosed in the "bad old days" recall how we were treated: institutionalized, abused a la Lovaas and his "autistic people are not human in the psychological sense" opinion, strapped down, drugged, beaten, etc... and are understandably *not* happy! You may see the eloquent (and perhaps kind of snarky) writings and assume these folks are “high-functioning because they can write", but in some cases you could not be more mistaken! Some of these very eloquent writers have problems caring for themselves and require round the clock care while others are doing considerably ok on their own. That's why autism is on a spectrum, folks.

• The word "cure" has its own implications. Parents and professionals want it; many people on the autism spectrum do not. Again, the division bell rings. Why? It's complicated, like many other things with regard to the autism spectrum. Some people on the spectrum believe that a cure would take away who they are. They feel that it might take away the many good qualities that they have... and there are many great qualities no matter how a person "functions"!

So, what happens? Well, the societies and salesmen (I'm including institutions like the NYU and their "Ransom notes" in this description) use the negative language to get the "awareness" of autism out to the public. (More like awareness of their service and the money comes flowing in...) People on the autism spectrum who don't appreciate being called travesties, diseases, "The Enemy" (as Ms. Carter says at the end of this article), worse than bird flu and cancer combined, etc. (Yes, they take this personally and wouldn't you if this is how your medical condition was described??)

In short: You get a division.

People are pitted against each other: parents, people on the spectrum, service providers, societies... it's like a weird war where there are not two sides fighting for a specific purpose, but everyone is just fighting each other for a number of reasons.

Fig. 1: I created the diagram below to illustrate how I see this conflict:


The autism world is a strange little place indeed! Autism is a strange condition in that incites such hatred, such negativity and such passion! Passion is great if it is used to actually help. What it does in most cases is cause more harm because of the negativity behind the passion.

My question is: how is this helping *anyone*? How is this serving the target client: people on the autism spectrum? How is this serving the families? How is this helping to allow proper scientific research to be done?

I'll tell you who the enemy is, and it's not autism... it's negativity and the massive amount of infighting going on that prevents any real progress from happening.

These are your enemies, ladies and gentlemen. A house divided is a house that is conquered.

There. I've done some complaining; now let's move on to something more productive.

Some problems have been identified. What are the possible solutions? Let's start there...

The first step, in my opinion, is to change attitudes.

Negativity on any side of this strange little battle helps no one!

The first attitude to change is the "I'm right and you're wrong attitude". Guess what? All of us are right in some respects, but wrong in others!

Example: Let's look at autism's history on the medical stage:

• In 1943, autism made its debut in the scientific world when Leo Kanner wrote a paper called "Autistic disturbances of affective contact". He made some interesting observations, such as: autistic children seemed very anxious but were very intelligent, there seemed to be at least one member of each family who had similar behaviour, the parents of these kids had, for the most part, brilliant minds and were a cut above the average in that regard (if not also a little aloof), autistic children are born not made (meaning, the vaccines and the aloof family members didn't cause this... autistic people are born that way).

• Bruno Bettelheim, a holocaust survivor, noted that autistic children behaved in a very similar manner to his fellow inmates in the concentration camps. The behaviour was that of someone who is in a state of high stress. Now, most of the kids he saw were not prisoners in concentration camps; they came from nice homes for the most part, so what was their problem? Bettelheim wrongfully (IMHO) blamed the parents. (I can see his point, who do little kids interact with the most? Their parents! But I also do not believe that the parents were the cause - well not their behaviour toward the child.)

• Enter Bernard Rimland from stage left with his biomedical theory. He made an astounding claim when he said that there may be a medical basis to autism! As the dad of an autistic child, he refuted the "refrigerator parent" theory completely.

• Enter the behaviourists from stage right and their "Applied Behaviour Analysis" AKA: "ABA". One thing that must be understood is that the school of behaviourism has never believed that behaviour is caused by an underlying condition. They believe that behaviour can be shaped, and indeed it can... but at what cost? Ole Ivar Lovaas based his behaviour analysis on BF Skinner's theories. (B.F. Skinner, by the way, kept his daughter in a box for the first two years of her life because he believed that providing adequate heat, food and water was enough to sustain a child... this same daughter would not allow him anywhere *near* her children as a result!) I have read many accounts from adults who unfortunately got treated by this man as children and now say they were quite abused. I myself was subjected to his style of treatment at the age of 2 and can attest that it did nothing other than scar me. It did not help at all!

• Andrew Wakefield, gastroenterologist, found that many autistic children had digestive issues: reflux, motility issues, etc. I agree with him on this case since I have these very same issues which cause a lot of my behaviours to worsen when I'm feeling sick. Then he published a study about the MMR vaccine... Wow! The poop storm this single paper produced was astronomical and is still raging to this day! I won't get into how he was ruled unfit to practice medicine or how his paper was retracted by the Lancet earlier this year. Neither of these have anything to do with this particular post. What I'm addressing is his finding of digestive issues.

• With the advent of some new technologies, scientists are finding some very interesting things about autism. Some are finding some genetic clues (which have got many on the autism spectrum in an uproar because of the whole "eugenics" factor. There is an ethical factor if people decide to abort babies who have that gene.). Others are finding autoimmune links. As you can see, autism research has gone in many different directions over the years and continues to do so. However, none seem to meet in the middle. Never the twain shall meet. All of these people, in my opinion, have got some things right, and some things wrong. Perhaps one day, things will begin to come together just like they have for other medical conditions and the quality of life for all involved on the autism spectrum might take a turn for the better.

The second thing that needs to happen is a shift in attitude. This is a not a "war". Autism is not the enemy. This is not the end of the world - seriously, people on the planet are all still alive and doing their thing even though your child is on the autism spectrum!

It is not normal for a person to be on the autism spectrum, so what does that make autism? A medical condition like any other medical condition that makes a person not function normally in one aspect or another. This is not to be negative, but to state it like it is.

Autism is a medical condition that has a lot of challenges because it is not the same across the board. Each autistic person is affected in different ways. This is why it is so frustrating for many people! It is a medical condition that is still so very new in the scientific world and not fully understood by anyone. Back when I was a kid, autism was rarer than rare. Now the diagnosis of it is so prevalent! There is so much yet to learn!

Negative undertones lead to negative thoughts and negative thoughts often lead to negative actions. This is why we see reports of autistic children being mistreated by caregivers, teachers and therapists... and yes, even parents! (If we want to get extreme, let's look at the cases where autistic children and adults have been murdered by caregivers... including parents.) Why is it ok to treat autistic children in manners that would be illegal if done to criminals in prison? (Judge Rotenberg Centre comes to mind)

It does not need to be this way!

Let's go back to some of the points from the beginning and see how the perspective could be positively changed in the climate of the world of autism:

• Autism is still new - Let's allow the researchers to do their thing and learn more about the autism spectrum...all aspects of it! Is it autoimmune, is it just a behaviour problem, is it caused by vaccines, is it caused by bad environment, etc.? Let them do the research and let them find out. A note to the celebrities who are pushing medical opinions or agendas: until I see you graduate with a genuine PhD in the field of autism (that involves obtaining a university degree in something other then PR or acting and actually spending many years engaged in proper research - this could take a while!), please stop it.

• Societies: Stop making the money on negativity - I am the chair of a board of directors in a local society. (Allowing more people on the autism spectrum a voice in the board of directors, by the way, might help your society immensely... it has sure helped us!) Our mission involves improving the quality of life for people on the autism spectrum by providing families with support and a network of all sorts of resources that might be of help. (Not a direct quote, but you get the idea) Notice there is no "boo-hoo" factor here? Our agency gets quite a fair bit of funding too! Ok, we're not the multi-million dollar entity that Autism Speaks is, but we're doing well enough. We offer hope, support and we want to improve the quality of life of those on the spectrum, however that may be. These are all positive things. We are accepting of people on the spectrum, we do what we can to accommodate their needs and we do what we can to provide a win-win situation for all involved (families, friends, workers, etc.).

In short: societies could focus their ad campaigns using positive language like: offering hope, improving quality of life, supporting families and most of all supporting those on the spectrum so that they can be happy, healthy and successful in their own way. These words do bring money in... really! Support, education, awareness and a broad spectrum of services (not doom & gloom) is what helps families. I know this because I see it every day in the agency I serve and we're doing just fine!

• People on the autism spectrum are not clueless, stupid or unaware. They are quite the opposite from what I have seen. However, many are quite angry and for good reason. As one person said in the comments: "I have autism. Only I can know my own condition". Example: My parents think they know all about my autism, but they had no idea of the digestive issues, the painful acid reflux, the searing headaches or the neurological difficulties I faced throughout my childhood and still do. They are only now starting to understand... 32 years later, but only because I have explained it to them and they've been willing to listen (it took a long time for them to be willing, believe me!).

• Theory of mind and communication are both two way streets. It is often said that autistic people have no theory of mind. I find the same problem with non-autistic people. They don’t have a clue what it's like to be autistic anymore then an autistic person knows what it's like to be non-autistic. There. We now know that neither side understands the other very well. How do we change that?

That means:

* Autistics - If you want the NT's to listen, you have to speak at their level in a way that they are most comfortable. That means being polite and not being forceful, overly pedantic, rude or angry. NT's tend to tune out just as we do when they're using their flowery words, cliches and political correctness. If we want them to communicate with us on our level, then we have to reciprocate.

* Non-autistics - Please communicate in a manner that allows an autistic person to be comfortable talking to you. If typing works, then type. If sign language works, then use it. As a fellow person on the spectrum put it succinctly:

1. Stop misrepresenting or re-interpreting what autistics say.
2. Let autistics speak for ourselves.
3. Stop dismissing autistic perspectives as invalid.
4. Stop imposing artificial divisions among us.
5. Listen to what we have to say.
(From Bob Badour's website: https://www.badour.net/autism/respect-long-overdue.html)

There is much to be learned from both sides: NT's (non autistic people) can learn a lot about what it's like to be autistic and why their children do what they do. Autistic people can learn a lot about how to get by in an NT world and how we might best get the services and help we do need by asking the right questions or taking the right approach.

Let's open the lines of communication!

• Causes and cures: change the focus - Can we please focus on what actually helps a person on the spectrum? We are so stuck on cures, causes and negativity to raise money that we have lost sight of the real goal: to help improve the quality of life of people on the spectrum and those who care about them (parents, friends, caregivers, etc.) Leave the causes and the cures to the researchers. Focus on helping to improve the quality of life for people on the spectrum now!

1. This is not about who is "more autistic than thou"! From Amanda Baggs to Ari Ne'eman, autistics have stories, opinions, experiences and they deserve to be heard, respected and understood, no matter what their so-called "functioning level" is. They also communicate with each other a lot (check out newsgroups and mailing lists run by autistic people and you'll see lots of communication!)

What is so wrong with treating an autistic person with the same respect as any other human being? What is wrong with listening to them?

Does Ari Ne'eman not have his challenges? Does he not exert a lot of effort to be as "high functioning" as he appears? Has anyone considered that Ari Ne'eman might be in contact with lots of families and people on all parts of the spectrum and not just speaking for himself? I know for a fact that he is in contact with many people every day!

How is that unrealistic? If you start treating autistic people with more respect, they might do the same instead of being inspired to fight. Let's cease the power struggle and work together, shall we? Let's allow the eloquent among us to have a voice and let's help them by opening the lines of communication with them so that they might better deliver our message to those who need to hear it? (Everyone!)

2. Autism is not the enemy; consistent negativity, misinformation and division are.

To use a knight in shining armour analogy: Don the armour of understanding & acceptance, take up the shield of objectivity, wield the sword of curiosity and ride the steed called Hope and you will most certainly slay the dragon with the three heads of negativity, division and misinformation!

Only then will you be able to rescue the people in distress who have been menaced by that three-headed dragon for so long.

Only then can the people unite and make a positive difference in the climate of the world that is autism.

Only then can we be of true help to anyone involved.

3. Comparing to other medical conditions. Yes, Autism is a medical condition. It has its challenges. It is not a picnic for anyone, not even the person on the spectrum!

Diabetes or cancer, by the way, cannot be compared to autism (other than just being medical conditions themselves), so please stop doing it.

No one tells their diabetic child or child with cancer that they'll never amount to anything, or that they are a burden on the system or forces them to just "stop behaving like that!" through rigorous behaviour modification! They actually try their darndest to help their children *feel better* and improve their quality of life, not make them feel bad about a condition they cannot control and force them to pretend they are not that way.

Respect is a two way street. So are communication and theory of mind. Why don't we start opening the lines for all three?

Let's stop fighting. Let's start talking. Let's start actually helping!

Perhaps then we can truly make a positive difference...

I came across another video today which was produced by Rethinking Autism and this is one I think should be seen everywhere.

Rethinking Autism (not to be confused with Rethink Autism - that's another group of people) was started by a mother of an autistic boy who has had enough of the quackery and pseudoscience and quite possibly other things as well.

I challenge everyone out there to "Rethink Autism" and take a positive stance to raising awareness... for the good of all on the spectrum and the people who love them.