Autism research needs more attention

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Autism research needs more attention

#1  Postby Agrippina » Aug 13, 2016 11:44 am

I saw this item on Sky News this morning. It hit a nerve. This is my rant on Facebook. I've copied it here for a wider audience.

The problem with autism is that it is not an obvious issue unless there are actual functioning impairments that make people notice something more than what I've always been told "weirdness". It was my own experience of being bullied on Facebook this week that made me want to express my anger. I probably wouldn't have done it if I hadn't seen the interview with the mother of the man who is now on Holby City.

http://www.mirror.co.uk/tv/tv-news/kathy-lette-autistic-son-beat-7665811

Fighting back tears, Kathy Lette peeled a cruel note off her 11-year-old son Julius’s back as he returned from school.

“What does that mean?” he said. The large piece of paper stuck on by playground bullies was scrawled with the words: “I’m a retard – kick me.”

It was just the latest in a long line of vicious pranks played on him by his childhood tormentors. And all because he has Asperger's syndrome.


That is the sort of thing that happened to me, not only at school, but in every job I've ever had, and even with people who claimed to "love" me. Here is my post from Facebook.

I've been a little down in the last few days because of having experienced some internet bullying. Then today there was this item on Sky News, thanks Karen Withers, which showed me I'm not alone. The bullying "you talk too much", "you don't have filters", "you say the first thing that comes into your head", "you speak out of turn", "give someone else a chance", "stop all the obsessing, find something else to talk about", "why do you stay at home all the time", "stop flapping your hands", I've had enough. Barry saw the clip, said he could see exactly where I was coming from in what the mother said. I'm not disabled, I'm not handicapped, I'm not weird, I just want to fit in like everyone else. So I'm going to say this with the empowerment I feel from the validation from my husband, and my best friend: if you don't like my mistakes, my ranting, my going on and on about the same thing, take me off your Christmas card list, block me, unfriend me, tell Facebook to stop letting you see my posts. I'm not going away, I'm here, and I'm going to take my place. The bullying will end right now.

The young man in this clip is an extreme case. The suicide ideation is a very real concern. I think about it every time someone tries to change behaviour I can't change. I was diagnosed only three years ago, until then, I thought I was just "weird", "bad tempered" "irritable" and even when I was under a psychologist asked for help with "agoraphobia" because that's what I thought it was. However, I wasn't convinced, neither was the psychologist because I was able to go out, go to work, raise a family, and generally participate in the outside world. What I never told anyone, because I thought I was weird, was that I would experience at least three panic attacks a day, just because someone asked me to go to an office I hadn't been to before, or because there were roadworks on my route home, and I had to take a different route. I would find excuses to take one of the kids with me to the shops, and when they were little, I had a live-in nanny I used to take shopping with me, just so I didn't have to deal with the outside world on my own. As a young adult, people tried to change the way I speak, "your voice drones on and on", or the way my hands flap when I'm agitated, or when I didn't make eye contact. I didn't know why I was bullied like this, so I tried to please everyone, just to fit in, and then cried myself to sleep at night, or went to cry in a corner of the garden because I felt worthless. But no more. This is it. I'm a grandmother now, and people still think they're entitled to tell me off because I don't understand. It's enough. As I said, don't like my long posts, don't like that I don't get when the website I'm sharing is fake news, get annoyed because I have 20 new posts a day, well then unfriend me, I don't need to be friends with unkind, insecure, insensitive bullies. i don't complain about people posting non-stop selfies, not ever, so please just leave me alone to use the only medium that allows me to tell the world that people with autism have rights too.


I'm sure there are other Ratskeppers who are autistic and who would like to weigh in on this.
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Re: Autism research needs more attention

#2  Postby Thomas Eshuis » Aug 13, 2016 12:49 pm

I've frankly given up having to defend myself to not just people I directly interact with but also random bystanders who feel the need to criticise anyone who doesn't act 'normal/civilised'.
Like I told you, even my mother, who knows I've certain autistic tendencies, think's they can just be removed by repeatedly telling me to behave 'normally/civilised'.
"Respect for personal beliefs = "I am going to tell you all what I think of YOU, but don't dare retort and tell what you think of ME because...it's my personal belief". Hmm. A bully's charter and no mistake."
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Re: Autism research needs more attention

#3  Postby Agrippina » Aug 13, 2016 1:06 pm

Yes, that's exactly what I've had all my life. From my mother and sisters, to the men I had relationships with, and a mother-in-law who saw it as the purpose of her life to teach me how to speak properly, and to stop flapping my hands. My dad got me, because he saw himself in me, which is why I didn't realise there was a problem with my third son when he demonstrated the same behaviours, and then when he was diagnosed at 12, said it wasn't autism because "he's just like me". It took a crisis, with him, and then me having to cope with that, that caused me to go for my own diagnosis. I've just had it now. Stupid people telling me to "get a filter", total bloody strangers on the internet trying to use "you're far too intelligent to have a mental problem" to make me conform to what they think I should be saying. I'm not defending myself anymore. If people think they can criticise me to my face without even considering what the reaction would be if they said to a person of colour "you should just act more white", I'm going to just tell them to piss off, to their faces too. See how they like being told they're just ignorant bigots.
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Re: Autism research needs more attention

#4  Postby Thomas Eshuis » Aug 13, 2016 1:39 pm

"Respect for personal beliefs = "I am going to tell you all what I think of YOU, but don't dare retort and tell what you think of ME because...it's my personal belief". Hmm. A bully's charter and no mistake."
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Re: Autism research needs more attention

#5  Postby Agrippina » Aug 13, 2016 1:54 pm

Thank you for that Thomas, I can post the video on Facebook. Yes, that's exactly it. People ask me how I could have married three times, and raised four children (and a couple of step-kids) and held down very responsible jobs, got through university, etc etc etc, and have this problem It's because there are a lot of things about me that are "normal" whatever that means. Because I don't understand what the hell "normal" is supposed to mean, I can't see what they're talking about. Is normal being silly about clothes and movie stars? Is normal being subservient to authority? Is normal being able to see that your kids do their homework? I don't know. I don't think "normal" people even know what normal is.
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Re: Autism research needs more attention

#6  Postby Agrippina » Aug 20, 2016 9:26 am

In the past few weeks I've had to deal with some life crises, changes in my daily routine, and new social contacts and experiences.

As a result I've also been a little more than normally sensitive to people trying to make me fit into their mold of how I should behave, and how I "over-react" too much much sensory input. I've had a couple of meltdowns because of this. I haven't hidden these the way I normally do, like for instance going into the bathroom and staying there until I calm down. I've allowed the people who've caused the confusion to see what a meltdown looks like. Now I think there is more understanding in my day-to-day life about leaving the television on the background, while I try to deal with people on the phone, and commitments.




...current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable....

Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.


Read more here
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Re: Autism research needs more attention

#7  Postby Caper » Sep 15, 2016 12:55 am

Hope you guys don't mind if I check out this thread now and then. Just started reading
"Neurotribes: The Legacy of Autism and the Future of Neurodiversity"

Very good so far!

//www.amazon.com/Neurotribes-Legacy-Autism-Future-Neurodiversity/dp/0399185615/ref=sr_1_1?s=books&ie=UTF8&qid=1473899557&sr=1-1&keywords=neuro+tribes
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Re: Autism research needs more attention

#8  Postby Agrippina » Sep 15, 2016 5:47 am

Of course.
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