Fanatics and Bullies and Trolls, Oh My!... The Dark Side of the Autism Community.

There is a strange phenomenon that is happening right now in the online Autism community. I have no idea how long it has been around... certainly longer than I've been participating in online discussions concerning the Spectrum. It's something that regularly leaves me with a bad taste in my mouth. I certainly had no idea of its existence until I discovered various Autism awareness groups on Facebook back in February 2009. There are many forms of it too. In fact the outrage that some of my online friends have shown me today concerning a recent incident has prompted me to write about it all here. I'm talking about something I refer to as “The Dark Side” of the online Autism community. I presume it's not just restricted to the Autistic Spectrum, but as I am so active in this particular community, this is where I have encountered it all, so this is where I will concentrate my writing. People who have encountered this in other areas are welcome to put their comments in below.

My first encounter with “The Dark Side” involved a snake-oil salesman. I shan't mention his name nor his product as I have no intention of advertising false hopes to those parents who are desperate to find that one elusive, scientifically impossible cure for their children no matter what the financial, emotional, physical or psychological cost. These are the parents that this poor excuse for a human peddles his wares to. What I can tell you is that this self proclaimed Autism specialist (who is also a specialist of other fields not even remotely related to Autism but that can miraculously be cured via the same product) came from nowhere on a very popular Autism group that I was an active member of, posting all these outrageous claims in a discussion thread that Autism was caused by diarrhoea which itself was caused via breast feeding. The more we all collectively jumped up and down and asked him logical questions, the more he went out of his way to feed the fire. Not only by insulting our intelligence, but by insulting us too. Eventually he disappeared just as fast as he had shown up. It was then that I decided to have one more look at his website where he peddles his wares to the desperate parents who might not be well informed enough to realise that he's just full of it. That's when I discovered his motives. All of our questions to him that he refused to answer in the group were now on his website in the FAQ section with his own distorted answers. Answers carefully worded to make his product look like the godsend of cure-all products, and now with no way for us who do know better to question him. Yes, we were abused to be used. He deliberately got us all outraged enough to ask all the questions that people might ordinarily query him with should they be considering buying his product. In some cases he did a blatant cut and paste directly from the conversation thread, much to the disgust of those who had posted the questions in the first place. All of a sudden our words were anonymously helping this slime-bag to deceive the buying public into falling for his remedy. Thankfully we never heard from him ever again.

My next encounter with “The Dark Side” involved a man who has since been identified as a serial troll. For those who aren't up to scratch with the lingo, a troll in this sense is a person who baits people simply to generate an outrageous response, which is exactly how the snake-oil salesman extracted his information from us. This new man however was not out to con anyone. Rather, he is someone who is so strongly opinionated in his beliefs that he hates anyone who doesn't agree with him. Again, I won't be naming the individual here. This article is not written to name and shame. It is written to show the varied types of characters that people may end up encountering from “The Dark Side” in their daily online activities. Eventually this person got so carried away with himself that he started insulting people because of their genders, and because of their sexual orientations. He even went so far as to insist that we were all the one person using a fake profile. This in itself was the pot calling the kettle black, as some online searching unearthed a few little secrets about this man including a list of his known aliases, which by a strange coincidence were also the same people who were standing up in the forum to support him. One other thing that this man did which really made me feel sick to the stomach, was to private message certain members of the group, the adults who live on the Spectrum itself. He belittled them and spoke to them like they were unintelligent babies, often taunting them just to generate a response. I've seen a few screenshots of these messages, and they are very, very disturbing.

I have since left this Autism discussion group and started my own, as the administrators seemed to have abandoned it. How do I know this? Let me introduce you to the saddest section of 'The Dark Side'. The trolls who get off by making fun of the disabled. They don't do this to research for their product like my first troll encounter. They don't do this because they're just too pig-headed to see past their own opinions like my second troll encounter. They do this because they get a laugh out of bullying and making fun of people with special needs. Occasionally I revisit the old group, and I'm dismayed with the amount of fake accounts with celebrity names, or names that mock the disabled that are happily posting insults about how all our kids are “retards” with posted photos of children who quite obviously have Down Syndrome. It's disgusting and sickening to see how low these worthless excuses for humans can be, not only insulting our Autistic children, but our Down Syndrome children too. Admittedly, the old group has had a few changes in administration since I was an active member and the new admin's are doing what they can to weed these dreadful people out, but they keep coming back with new fake accounts. Why? Because they're getting the reactions that they're looking for. People are naturally outraged by this behaviour and pipe up with how despicable those involved are. So the trolls come back again, and again, and again, with no remorse and no consideration for others, just a sick twisted mission to insult and aggravate for their own warped enjoyment.

Today I was drawn to the attention of a stranger's Facebook wall by some very concerned people. I have no idea who this person is, but he seems to have joined numerous groups on different causes which makes him look like a really great guy. But the comment he posted to his wall with a link attached saddens me and makes me think that maybe he only joined the causes so that he could do some research before doing some trolling using some fake profiles of his own. The link was to an article about an Autistic male who had been raped, and this stranger's comment simply stated how he found it all so highly amusing. That my friends, is one sick mind. To gain pleasure from someone elses pain is beyond my capacity for logical thought. Especially more that the victim is someone who this person most likely considers (wrongfully) to be mentally disabled. This man must have one of the lowest forms of a sense of humour imaginable. This must be a person who see's a homeless man in the street, and then chuckles heartily to himself as he kicks the begging cup from the starving man's hands. I find it insulting that I have to share the same planet with this person. I am happy though that my friends have brought this individual to my attention, as I can now warn my other friends to block him from their Facebook accounts.

So what can you do if you ever come across a troll? Well, from experience I can safely say the best thing to do is to bite your bottom lip and make no response at all. Make sure you tell everyone else not to respond either. The trolls feed off your outrage and disgust. It's what they breath for. Feed a troll and they'll always come back for more. It only takes one person to keep protesting and the troll will greedily lap it up. Starve and ignore a troll and they'll try harder, but eventually give up and go in search of some other poor unsuspecting group to get their jollies from. Not exactly a win-win situation, as some other poor unsuspecting group of innocents will end up having to deal with it, but to date, it's the only solution I've found. Gather up all of your friends and tell them to hit that report button. The more people who report the person's activity the more chance there is that an administrator will sit up and take notice long enough to ban the creep. If the report button doesn't seem to help then message the admin's of the group directly. If you find yourself in a group that no longer has any admin's then do yourself a favour and find a new group. Facebook no longer allows people to take over admin of an open group if there are no administrators left in it. These groups will forever remain vulnerable to attack with no way of getting anyone to ever remove the offensive people or their posts. It's a bit like going to a school that has no teachers or adults to check the bullies every now and then. Sooner or later the bullies will take over.

Having said all of that, let me also state that there are a great many good and wonderful people in the world, especially in the online Autism community. Unfortunately there is also a minority of rotten apples that spoil the orchard for the rest of us, I hope you never have to endure the displeasure of encountering even one of them. They are such small minded, uneducated people who really shouldn't be allowed to call themselves human. Absolutely disgraceful!!!

Ari Ne'eman and the Spectrum Culture.

I have been sporting a little 'I'm with Ari' badge on my profile pictures of late. While some people support Ari Ne'eman, others vigorously oppose him. One of my Facebook buddies was having a conversation with me about the man earlier in the evening and she did something that no-one's ever done before.... she asked me for my opinion on Ari. This is what she asked:

"I have read a bit about Ari, and so far.... I can't understand why people put him down for only being 22 years of age. I am friends with a boy who is 16 who is just as experienced. One thing I dont understand is why he doesn't believe in finding a cure. A cure would be nice - don't you think?"

Now, before I continue, please keep in mind that the following is my own opinion. I am not here to put words into Ari's or anyone elses mouths. I do not speak for Ari or anyone else. This is me making my own conclusions based on what I have read and discussed online to date.

Rather than saying Ari doesn't believe in finding a cure, I think it's more a case of he doesn't want to be cured. I've seen adults on the Spectrum say this numerous times and then all these parents jump up and down and twist the words to mean that these 'horrible' people have publicly stated that they're against curing Autism. If the man is or isn't for a cure to Autism then that's his business, he's entitled to his opinion as much as the rest of us. I don't believe in finding a cure either. It's not because I don't want to find a cure, I'd be happy if a magic pill came out tomorrow and eased the confusion for those who needed it. The only reason I don't believe in finding a cure is simply because it is not scientifically possible, and building up the hopes of people who don't know this is very disturbing for me. I'd love a cure, I just don't believe it's possible without restructuring the anatomy of the Autistic brain. There are physical differences in the brains of those on the Spectrum that cause the issues related to Autism. Most people don't want to know about this because it means, in their eyes, that there is no hope of their children ever being 'normal'. Progress can be made for the fortunate people on the Spectrum, but an all out cure is simply not scientifically feasable.

Ari's stance on genetic testing is more of an anti-abortion issue I think. He see's the issue in that it might have been him that was aborted had a test been available at the time he was conceived and that people on the Spectrum have just as much right to live as anyone else, rather than be 'prevented' from being Autistic via fetal execution. Again, this is his opinion and I admire people with opinions. Even if I wasn't to agree with this opinion, I would still admire the man for his opinions and for having the strength to come out in public to state it for the rest of the world to dissect and debate. And for the record, I do believe that people on the Spectrum have as much right to live as the next person, but I'm also not anti-abortion. It has it's merits where it is necessary so long as it is not abused just because a parent isn't happy with the perfection or lack thereof of their upcoming child.

I've recently been talking with adults on the Spectrum who are beginning to see themselves as a new human culture, not in those words, but in effect they are saying, 'Hey, there are now people on the Spectrum here. Don't discriminate against us! We're humans too. We are a new breed and want to integrate with society, get used to it!' which I totally admire. We are now seeing the beginnings of movements in the United States similar to what happened with the African American people when they started wanting equality with white people, rightly so I must add. Only now it's the people on the Spectrum and their parents and siblings and carers saying "Hey! We wan't to be recognised and treated fairly now!" There are many schools in the United States that routinely place children on the Spectrum in restraining holds for hours on end. If the child then fights back out of sheer terror the police are called and children as young as 5 are being arrested and led away in handcuffs. These people just don't get it! DISCIPLINE DOES NOT CURE AUTISM and it is NOT an effective treatment. If anything, it makes the situation worse. These are not animals or naughty children. They are young people who need time and patience and nurturing to allow them to grow and mature at their own pace. Time to allow their extra brain cells to sort out which connections work best together. Patience with their frustrations as they learn to cope with various situations. Nurturing of their strengths to help develop confidence in themselves as they prepare for adulthood.

Autism and Aspergers does not suddenly vanish at the age of 6 or 13 or 18 or any other age. As some individuals on the Spectrum grow and mature they learn to manage life's little hurdles a little better. The Spectrum is here to stay, and we need to accept it as a new culture before we start throwing all these highly intelligent people back into the mental asylums and writing them off as diseased or mentally retarded. I've said it before and I'll say it again: Some of my most trusted and intelligent friends are individuals who live on the Spectrum. For those who learn to manage their abilities, society needs to change to include them in all aspects. For those who continue to struggle, even into adulthood, society needs to change to treat them as human beings. That's a good starting point. We can work on improving it from there.

Yes, I do support Ari Ne'eman. I support that he has his opinions and I support that he is intelligent and is representative of the Spectrum's newly arising culture. The man deserves to be a part of the history books, not for his opinions, but for his achievements, and I believe he has many achievements that are still yet to come for him.

Personal theories on Autism.

Some people have read my previous blogs on the anatomy and composition of the Autistic brain and have messaged me via facebook with questions on whether I think their ASD children should have some sort of scan to see if any abnormalities are present. Others have messaged me asking what my thoughts are concerning the MMR vaccine. My response is as follows:

If your child has Autism a scan won't make much of a difference to his or her lifestyle. It depends if you personally need to verify this and if you can find a doctor willing to organise it all for you. The studies I've read have all been in relation to autopsies on adults with Autism. I don't really know how obvious it would be in a child. The late Kim Peek, the Autistic savant that inspired the Rain Man movie, had a complete scan and discovered he had no corpus callosum at all. Once he knew, it didn't really change his life. But I guess it was nice to know, if not for him, then perhaps for his long devoted father who took care of him up until the day he passed away.

Personally I don't believe vaccines are causing Autism. If there is any link then maybe an already Autistic brain could possibly be tipped just that little bit over the edge if the right conditions exist to cause a bit of extra blockage in the corpus callosum. This is just a personal theory of mine based on my own readings of various studies. I don't believe there are any studies to support my logic. I just found lots of pieces of the puzzle, contemplated them and came up with my own conclusions. My previous blogs go into more detail, you can find links for them to the left of this one.

There are genuine cases of baby's seemingly developing normally and then changing into Autistic children overnight at approximately the age of 2. It is a recognised form of Autism. There are also genuine cases of baby's showing signs of Autism from birth, this is also a recognised form of Autism. The main problem with theories on Autism is that it is such a wide and varied spectrum. No two Autistic people are alike just as no two non-Autistic people are alike. They are just as individual as the NT kids down the street, right down to how differently their brains develop and learn. I believe some people on the Spectrum are capable of managing their Autistic tendencies better as they get older than others. The brain just needs that little bit of extra time and nurturing so it can figure out which of the excess brain cells work best together before they get 'hardwired' into place to form a memory or skill. Other people on the Spectrum are not so lucky. I think it all depends on which parts of the brain contain the lack of brain cells and which parts contain the excess. There are theories that the reason some Autistic people are more gifted in certain areas than others, such as being a wiz at maths or painting or what-have-you, is because the excessive in grey matter sections of the brain that 'take over' for the sections that are lacking are actually in the areas where the maths or the painting or the what-have-you's would normally reside. It's different for each person.

I have 3 boys on the Spectrum, ranging from very high functioning for my eldest boy to classic hand flapping, tiptoeing, sentence echoing, lining up of objects etc, for my youngest. My older brother I believe is an undiagnosed Aspie and as I've studied and learnt about the Spectrum, I've come to the understanding that I too have quite possibly grown up with Asperger's myself. In my family's case the Autism seems to be genetic. I was never given any vaccines whatsoever and our son's all exhibited signs of Autism from birth. They just never seemed to take notice of us like other parents babies did.

I have many, many friends on facebook who are parents of children on the Spectrum as well as many, many friends who are adults on the Spectrum. They are all free to ask me any question on any topic related to Autism and I have many, many people who are happy to discuss these issues. Part of the reason why I ended up with my theories that you've seen in my blogs is due to the bouncing around of thoughts in my Facebook Autism group with some very intelligently minded people.

I'm not an expert. I'm just a parent of 3 Autistic boys who has done his own personal research of the available information about the Spectrum. With my multitude of online friends, who mostly in some way have Autism in their lives, I continue to learn about this different ability. My children are all gifted in their own little ways. Sometimes I see them as an upgrade of myself. The only disability they have is via the uneducated people in the world who just don't fully understand what Autism is. It's not a disease, it's just a different way of life with different priorities. I believe our eldest boy will grow and learn and develop enough to be able to make his way in the world on his own. As for our youngest.... time will tell. He makes the most amazing progress when we least expect it. Some of the things he is doing now, we never dreamt he would be capable of doing only a few short years ago. All this without the need for snake-oil remedies and cures which so often get the credit for what seems to be natural progression. We might have 3 Autistic children, but we also wouldn't swap them for the world. It just makes the rare cuddles and kisses all the more special.