Autism is a Controversial Issue – People Fighting Online

I left Facebook a while ago because I kept getting sucked into the arguments between parents and Autistic people, Autistic people and the anti-VAX movement, and medical professionals and Autistic people. Today I logged back in and was quickly reminded why I left.

The first thing thing that upsets me is that all of these people think they know more about Autism than Autistic people, as if our first hand experiences are of little or no value. This is often parents but can also be medical professionals and organic health nuts (I eat organic but these people are extreme).

Cure culture fanatics telling us we are sick for wanting to stay Autistic – sick for wanting to stay the way we were born. Parents telling us we don’t understand because we are not like their child (some of us WERE at one point and have worked hard to improve as we grew up). Doctors telling us our claims don’t make sense to them , dismissing our complaints.

Next I am saddened for the children who’s parents are always telling everyone what a burden their child is. Many non verbal children can understand spoken language and may be able to read some day. Putting comments like this on the internet publicly doesn’t feel right to me. Telling everyone your child is broken doesn’t seem like loving acceptance either.

Brain damage and Autism do have similar traits but even if you have a brain damaged child – shouldn’t you love them? I am not a parent. All I know is how I would feel if my parents said those things about me.

If someone always talks about you with pity you will eventually begin to pity yourself. From a mental health standpoint this can cause a LOT of problems. Autistic people seem have more health problems and anxiety when they have low self-esteem.

There are a lot of unknowns with Autism. It seems there may be many contributing factors but my money is on genetics for most cases. Human brains are changing at a rapid rate, trying to keep up with the quickly changing world around us.

My brain is at ease with nature in the fresh air. The artificial world is unpleasant to me. Is this something primitive left over in my genetics, or am I a canary in the coal mine? Science may tell us some day.

Most upsetting are the people who want to cure and prevent Autism. I fear this could be a big problem for humanity if they succeed. All of the different brain types and thinkers make the world a better, more progressive, and interesting place.

I hate that this issue is tearing people apart. People get so heated and angry when someone disagrees with them on this topic, they say nasty things with little regard for the other person. It is nasty it is ugly and we really need to stop.

Stop telling Autistic people they are unwanted by society. That is what you are telling us when you say you want a cure for Autism or want to prevent Autistic people from being born. You are saying that being dead is better than being Autistic and I disagree.

I know you can’t reason with or speak to these people. They are close minded and the frustration, like Facebook, is a waste of my time – so I log back off and return to a happier place (my own blog).

The day this went live on Twitter someone took offense to my blog. Its crazy. You can not please everyone and my OCD would make sure I NEVER hit publish if I tried.

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48 thoughts on “Autism is a Controversial Issue – People Fighting Online”

  1. I am convinced to a man that the MMR jab is the reason I have Asperger’s. But Facebook is just another example of White Collar Crime being exonerated by the echelons of Government.

    Social Media at large is just a huge honey trap set up by ‘Big Brother’ to burn bridges down in communities. Almost like Jesus prophesying about, “Nation rising against nation!”

    The less said about Zuckerberg, the better!

    Liked by 1 person

    1. You know. I don’t have a problem when people choose to believe whatever they want as long as they don’t force it on other people. I have video of me before my shots and you can see in my development growing more and more obvious as I age and just don’t develope the things other people do. I know in my case the vaccine did not make me the way I am. Some people tell ME that I am wrong about MYSELF and they don’t even know me. What on earth?

      Liked by 2 people

  2. Very well explained and I agree with everything said except for me, the saddest situation is when autistics try to dominate other autistics and this continues to be allowed to happen. I founded a peer-led group for autistic adults to use nature and gardening to relieve anxiety and build self esteem through joint or individual projects but there’s a local crowd of autistic people who assume a right to dictate what is available for autistic people locally. If they’re not allowed to effectively take control of such a group it will be obstructed – no way for autistics to help autistics in my view. They do more harm than good for us just to satisfy their own egos and the heavily funded ‘so-called’ autism organisations who commodify us at any opportunity, make good use of these people. I feel that they betray all of us the worst.

    Liked by 1 person

  3. You make some very good points. My son has said he would like not to be autistic but on the other hand he doesn’t want not to be him. If he had the opportunity to take a “cure” pill or injection when he grows up, if the science is ready, would he? I have no idea. If someone gave me the chance not to be depressed or not to have huge mood swings or such an almighty busy brain I might be happier but I wouldn’t have the thoughts that make me Me. So would I? I really don’t know. Strongly conflicted.

    Being the parent of an autistic child is tiring and stressful and full of concern for their future. It is also isolating. I have fewer opportunities to socialise because of difficulty getting appropriate babysitting. I also can’t work because of difficulty getting an appropriate child minder. So I can’t talk to my friends or colleagues about my feelings as often as I would like. My social interaction is usually online. Sometimes you have to blow off steam or go crazy and I truly mean crazy. I nearly had a breakdown last year due to a build up of many pressures. Raising any child is tiring and stressful and all parents vent at times. Doesn’t mean they don’t like their kids or find them a burden in general. There have been times when I have posted on Facebook about my stresses so that my friends can understand and to get some sympathy in a rough spot. Doesn’t mean I don’t love my son with all my heart. But yes, sometimes he is a burden – as is every child! Painting an only-positive picture of autism would be a lie and would be a disservice to everyone. I tell him often that I love him, he is wonderful, his autism makes him different and that difference is perfectly fine and he is awesome. I celebrate every achievement and he is brimming with self confidence. I post often about his funny quirks and his successes and our mutual happiness. Sometimes I post the darker stuff too. It’s about being real.

    I agree with you 100% though. Autistic people don’t need to change. The world is full of difference and will always be so. Nature loves variety and so should we.

    Liked by 7 people

  4. Are you comfortable with me sharing your post on my FB timeline? I think your perspective is really helpful. And with me reblogging it and referring and linking to it in my own blog? Your thoughts are the sort of questions I have been asking myself about my son’s feelings if he were to read my FB posts and blog in the future. I would like to do an article about that.

    Liked by 2 people

  5. I really appreciate your perspective on this. You raised a lot of really important points that need to be heard! Your voice, your words, and your own thoughts on autisim are so needed right now. People need to stop seeing the label and start looking at the person.

    Liked by 4 people

  6. Parents often make the mistake that the child who is coming will be a “little me”. In fact, we get who comes to live at our house–period. And then we parent them and watch and help them grow. If there are problems. it is a collaborative enterprise to deal with who we ALL are and to build the future.

    Liked by 3 people

  7. Yes!! I am one of the parents that feel like I can embracevthat my child is special, I love that she is different. The only issue I have is wishing she could communicate with me better but that is one reason why we are working so hard to figure out what works best for her. Very good post!

    Liked by 2 people

    1. Hi Herbert – this entire blog gives great first hand information from Autistic people. Our experience can not really be summed up in a one page post. There are a lot of things that make us different.

      First I want to say that each and every Autistic person experiences the world in a very different way so what I state below may not be true for everyone. I am going to go over some generalizations that are true for me, also taking in mind what has been shared with my by my amazing readers.

      We tend to struggle with spoken communication but many of us do VERY well behind a keyboard. We can have tricky short term / working memories but a LOT of us have long term memories that are FOREVER. We need time to process and go over things but once we understand something it stays in our minds (or that is how it is for me). Time to organize and prepare thoughts is essential for me because of this.

      Many of us have sensory sensitivities. Bright lighting can cause chronic migraines and other illnesses. I can hear everything which is unpleasant because I can’t tune individual things out. My hearing is essentially so sensitive that I can’t hear conversations in busy rooms. Not to mention the distraction of every small noise seeming VERY loud. Clothing can be itchy and irritating. Tags and socks are the worst and certain grooming activities can be extremely uncomfortable. Getting a mani-pedi is NOT relaxing for me. Even getting a massage is difficult because of another person touching me can make me want to jump up and run.

      I have a hard time sitting still. Our bodies (and minds) crave constant motion. I am always playing with something rocking in my chair, humming or singing. This is called stimming. It is a regulatory behavior and helps with sensory input, relaxation, and focus. I also speak to myself out loud a lot. These things “normal people” don’t tend to accept but we REALLY need them to.

      Autistic people can be extremely intelligent but learning disabilities and intellectual disabilities can also happen with Autism. Just like “normal people” our IQ’s are all over the place. People often assume Autistic people all have intellectual disabilities. I prefer to think of it as a difference. Also EVEN non-verbal (non-speaking) Autistic people can fall into the “high IQ” category. Never assume an Autistic person cant’ understand you.
      I can speak but am not as good at it as most “normal people” but there are a lot of Autistic people who have apraxia of speech. This means they may have all the words and thoughts inside BUT the mouth pieces don’t move. For some reason the brain can’t tell the mouth and related parts how to work. Some children speak late and others never speak. I had no speech delay.

      Dyslexia and Hyperlexia are also common in Autism. I am Hyperlexic.

      Our brains tend to be spiky. We can be far above average in some pretty random areas, art, math, music, memorizing, writing, or not. At the same time our deficits in the areas that don’t develope as fully can be perplexing to the word’s general population. For example – my conversational skills are so limited that I can NOT tell when my turn to talk is. My solution? Don’t talk. Before I stopped talking people kept calling me rude but I was doing my best. I never wanted to be rude.

      Summing it up in a blog comment or post is impossible.

      Liked by 4 people

      1. This was quite something for a jumpstart. I’ve put up a sticky note to take some time for your blog after my mid terms. I should be able to learn even more on this. Actually, in my country, Zimbabwe, most conditions of this ilk are tagged with superstitions or over-simplification at best so, please, forgive my ignorance. Interestingly, when you were describing how some autistic persons take time to understand concepts but have a long retention time, it reminded me of something we learnt in Management Class. It’s an acronym, LILO, meaning Last In Last Out and it’s one of an alternative classification criteria for students’ perfomance. My professor told us, and it makes sense, that LILO is the optimization point for most students. Anyway, I learnt something from you today. Feel proud! And sorry for crowding the topic.

        Liked by 1 person

      2. This is a great explanation of the many components to autism that you experience. Some of them I was aware of and some just learning.
        One thing I have trouble understanding is touch sensitivity. My 2 adult children and my brother all have this. I ask them to explain it to me but I just don’t get it. I do understand it is not pain. I can’t stand any wool but to me that is itchy/irritating. Can you elaborate as to what it feels like when being touched?
        Thanks for all your openness and support to all.

        Liked by 1 person

        1. Its like I am more ticklish. Everybody is different. Its not really a tickle so much as an urge to escape when touched by surprise. Like a startle response. Also itch tags and socks can burn my skin of feel like ants biting me.

          Like

  8. Your posts educate me and I appreciate hearing your thoughts. Thank you. I’d love to hear your thoughts on research to help those with autism lessen their stress from coping in a world that doesn’t understand. How do we assist an young child, etc.? I think we learn from persons such as yourself. Thank you for your voice.

    Liked by 1 person

    1. Encourage the children. Be positive with them and help them grow their self worth. If they do not feel worthwhile they won’t do well in life. Focus on all their strengths. Help them grow in things that they are passionate about. Help them learn relaxation techniques and if you can teach text and written words writing has opened my world. I was closed off before. Teach them to journal and try to get them to talk about feelings and experiences in their journals.

      Like

      1. I have three great nephews with autism, so thank you for your advice. We had two of them stay with us overnight (with their parents) and we had a wonderful visit. We had things that interested them and they enjoyed exploring them. We still send them things occasionally that remind them of their time spent with us. I have fond memories with them.

        Liked by 1 person

  9. I like how you mention that just because a child is non-verbal, doesn’t mean that they don’t understand what they are saying. My son is semi-verbal and I think people tend to forget that he can understand what they are saying. He understands a lot.
    Great post. The best experts in autism are people with autism.

    Liked by 2 people

  10. Yes, this saddens me also. Autistic people are the only ones that know the most about Autism, because they are Autistic themselves. Now, I do believe that there are good professionals out there that are willing to listen and help, but at the same time many doctors stereotype Autism and do not help. I went through several doctors when I was younger and they all said that I was a “normal” child. A few years ago I was tested again and I got a diagnoses of being Autistic.

    Liked by 1 person

  11. People like Simon Baron Cohen encourage parents to think of actually autistic people as an unreliable source. Organizations like Autism Speaks tell people we have no voice, even though we are screaming to be heard over their garbage.

    Liked by 1 person

  12. I stand in both worlds, as an Aspie and as a parent to multiple kids on the autism spectrum, in various places. My daughters have varying versions of “girl Asperger’s”, and my boys range all the way from being Aspies who talk nonstop to my oldest son, who at age nine is still nonverbal, still wears diapers, and still drinks from a bottle. It is challenging to raise such a family, of course, but we try to be extremely careful not to portray autism as some scourge to be cured and to remind people that we – my wife and I – are also on the spectrum. We have been given the usual propaganda claiming that vaccines cause autism, but we have our own evidence against that. The MMR vaccine is the one most commonly blamed but, due to a mixup when we switched pediatricians years ago, my oldest son got his first MMR shot late – well AFTER he had begun manifesting clear signs of autism. And our third oldest boy is shown Aspie traits very clearly as well despite not starting his MMR sequence yet.

    Liked by 2 people

  13. I wish I could broadcast this post to the ends of the earth! As a carer I know it can be rough but I wish other carers would stop and realize how rough it is for their autistic child. I also 100% agree that we need neurodiversity. How boring if everyone was the same. As a carer I really appreciate adults like you sharing your experience. Every person is different but I rather learn from an autistic person than an “expert”. Thank you!

    Liked by 2 people

  14. I have a brother who has Asperger’s and a son who has Asperger’s as well. I am saddened to hear that many people online are so horrible about it. As a sister and a mother, I never claimed to know more about what my brother and son are going through because I simply don’t anymore than my friend who tells me to suck it up and deal with it like she does knows anymore about my anxiety than I do.

    Everybody is different, that doesn’t make one struggle any less important than another. I’ve done a lot of reading books, reading articles and reading blogs to help me understand what my son is going through. I encourage him to talk to me. I try alternative ways to help him cope with his struggles. I can even understand a lot of what he’s struggling with because I struggle with the same things for similar reasons, even sensory ones. I encourage him to be who he is because I grew up feeling “wrong” in every way and I know that the hardest time for him is going to be through his school years (that’s when you’re expected to conform, but after that, individuality and thinking differently can benefit you in adulthood).

    I wouldn’t dream of trying to “cure” him. He is wonderful and he is unique. His ability to think differently will do him well in the world as long as I can help him out now. Just as I would never want to “cure” myself because it allows me to think and behave differently than others and I think that in itself is a wonderful thing, even if it makes parts of my life difficult to deal with.

    Liked by 1 person

  15. How well I know this frustration. Thank you for bringing it to light. I have all but abandoned much of Facebook and Twitter due to such ugliness. As an autistic, a wife an autistic, and a mom of autistics, I have seen thoughts all across the gamut. I own the fact our lives have their stressors. It isn’t all unicorns and lollipops. I feel for parents who are struggling with finding hope. But, for me, when it’s all about how bad it is, vaccine arguments, cure talk, or what autistics should call themselves, it can get downright infuriating-and depressing. Equally depressing are the fellow autistics who polarize me because I am self-diagnosed and-heavens to betsy-not a math genius. lol. Yes, I was actually told by a few that I could not be legit because I didn’t have the “usual” gifts. 🙂 Somehow, we must figure out how to band together for the common good of autistics everywhere.

    Liked by 1 person

    1. Thank you for adding in. Twitter scares me honestly. I have a LOT of anxiety EVERY TIME I tweet but I am trying to get over that because I feel like what I have to say needs to be heard. Just today someone – who I am pretty sure does NOT read my blog normally – took offense to the way I worded something. GOODNESS – people are OVERLY sensitive.

      Liked by 1 person

  16. It is very interesting what you say! i think parents may try to find a “cure” because they fear that their child will be rejected in society/school specifically. And autistic children ARE rejected, i mean those mothers who argue on facebook they raise children who hate difference, they hate that autistic children aren’t the same. And then their parents complain that autistic children may get special treatment in school even if they don’t get one. And so on and so forth, then the child is forced to switch schools he/she looses the few friends he has and those traumas aggravate his social anxiety. Every parent of an autistic child feels this pressure i think. Then again in Europe the tendencies are if a child is not “up to par” in some domains, if he is slightly behind then the others he is claimed autistic. We don’t even know what exactly autism is, but we categorize everybody we don’t like in it. If i ask my grandmother she says that autistic people are severely handicapped they can’t take care of themselves because at her time autism meant a severe illness, people who can’t communicate and can’t understand anything. The world is definitely changing and i think that we should change with it. we need people who can concentrate on a task and do it perfectly, we need people who can think outside the box. And we need to explode the term of autism because even if you are writing an awesome blog and you may have a diploma and you may have a good job, i assure you that in my country with an autism diagnosis you couldn’t get any job, you wouldn’t even go as far as an interview. People need to understand what autism is, what is the difference between severely autistic and autistic and what’s the difference between neurotypical and autistic, because they don’t know and they fear it. About the nasty things people say, well facebook give ground to that, it is so easy to curse and hurt someone it’s just pushing some buttons on the keyboard.

    Liked by 1 person

    1. Thank you so much – I do not have anything beyond a high school education. Teachers told me trade school would be better but I like art an music and they told me those things could not make a career. I also love writing. I did not disclose my Autism when I got my current job and I don’t think I would ever disclose in an interview unless I had to for some reason. I was not trying to hide anything when I got hired – I’ve been her almost five years now and was diagnosed when I was thirty. I had no idea I was Autistic when I started the job. The thing is I can suffer along and not tell anybody, pretend everything is alright, and act normal till I am physically ill if I have to. So I CAN hold a traditional job but at what cost? I have been very very ill from the stress of it.

      Liked by 2 people

  17. I hate the whole let’s berate autism children and their parents. Especially the whole jab saga, it was found to me unfounded data used to say the MMR jab caused autism. I have a four nearly 5 Year old autistic daughter who is so funny but hard work at the same time.

    Liked by 1 person

    1. And the other thing is – even if a brain injury occurred due to an allergic reaction – IS that Autism or is it something else? We know brain injury can look like Autism. How are they related? There are so many unknown factors. Someone I know claims her son was not AS before the shot. She believes it with all her heart but she and her brother both give off aspie vibes. I know one when I see one. The kid’s grandmother and aunt too. Maybe something happened but I think THIS child would have had the diagnosis eventually. She saw her son get sick he had fever and got ill then never got better. I believe this happened because I don’t see the family making it up but I do not know WHY.

      Liked by 1 person

      1. My little girl got her diagnosis before she had her shot, she was late having it due to being premature.
        I just dislike the fact that people think they can have so many views on autism without actually understanding, the daily life of someone living with it or a parent coping with it. Frustrates me so badly. I even have my own family members telling me how to parent my child. The same family members who refuse to babysit her as they can’t cope!

        Liked by 2 people

  18. I’m with you on this – hate all these “professionals” fighting with each other and no one listening. And parents too – trying things on their kids – non-verbal kids can’t tell you if a certain supplement makes them queasy or their head hurts.

    My son is non-verbal and types to communicate. He started typing recently (2 years ago) at age 12. It turns out he is talented at writing.

    From the beginning we were uncomfortable with anything intrusive. We stayed away from biomedical protocols, herbs, etc. We did try various communication strategies because we felt he should have some kind of a ‘voice’ and be able to make choices and feel in control. So even without words, my son turned out to be very sure of what he wanted. He had specific preferences and he made specific choices. This gave him a sense of security and tremendous self-confidence. The one thing missing was complex communication – you can only communicate so much with pictures and actions. When the typing came about, it was long opening a door to another world. His thoughts and opinions of 12 years came flooding out. This makes me happy – not because he has “made progress” with his communication – but because I can understand who he is and what makes him unique – a gift that many parents of verbal children take for granted. Even the silliest things he tells me these days – like some gossip about his friends – makes me happy.

    Liked by 3 people

  19. Hi, I found your blog ‘cos you liked my blog! I asked my 12 year old Aspie “If there was a pill you could take that would stop your autism, would you take it?” He immediately said “No, because then I wouldn’t be me!” Can’t get much clearer than that – it’s so much more about working to get society to accept differences than it is about finding a cure or apportioning blame!

    Liked by 2 people

  20. Hi Anne,

    Wow! You are so right! God gave everyone the specific brain they need and how to use it. We aren’t a cookie-cutter grey-matter mold. I think of the kids from the show Stranger Things. Society treats them as freaks and misfits. The truth is they had the thinking to understand how to save the “normal” world when it all turned upside down. We don’t know what is coming and it might be our different thinkers are the key.

    Keep in being you,

    Gary

    On Wed, Mar 1, 2017 at 1:25 AM Anonymously Autistic wrote:

    > anonymouslyautistic posted: “I left Facebook a while ago because I kept > getting sucked into the arguments between parents and Autistic people, > Autistic people and the anti-VAX movement, and medical professionals and > Autistic people. Today I logged back in and was quickly reminded why” >

    Liked by 1 person

  21. Love this post! As the mother to a son with autism I totally agree with you about autism’s amazing abilities and how the world needs different brains and thinkers. The few people who have said sorry to me when I said my son has autism, I have responded with a, why? He is amazing, intelligent and has taught me so much. I feel so bad about how hard it is for him navigating in a world that is so crazy and fast paced, but am doing all I can to teach him he can do anything he sets his mind to. We all need to be who we are, and I would never want to change my son.

    Liked by 2 people

  22. I do agree that it hurts to be treated with pity. That’s why in person I choose not to divulge my autism. I can accept my autism. After reading a book to understand myself, I can accept my autism and treat it as a gift.

    Liked by 1 person

  23. Reblogged this on Yoshiko and commented:

    I don’t like to be treated with pity. Therefore, in the physical world, I choose not to divulge my autism. So that they can treat me like normal people. However, I disagree with those people with nasty words.

    Now, I can accept my autism. After reading a book to understand myself, I can accept my autism and treat it as a gift.

    I’m glad to be able to meet Autistic Anna to enable to have a better self-understanding in terms self-care in mental, physical and psychological health.

    Personally, I agree with Anna in her last paragraph that I can’t reason with people who only cares about their own opinions.

    Liked by 1 person

  24. Reblogged this on Celebrating Individual Abilities and commented:

    Wheny who do not fully understand autism) fighting online.
    an actually autistic woman logs back on at Facebook, she is reminded why she left the social media site. Autism is a controversial issue, with people (many of whom lack an understanding or experience of autism) fighting online. This is a blog we very much enjoy.

    Liked by 1 person

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