What must we do to change things?

Who is it that doesn’t understand you and who don’t you understand? And what is this division you talk about?

We come to understand each other better by talking and listening to each other, don’t we? At least that’s how I do it.  I’m daily talking to people about my autism and people are always delighted to learn more.

I couldn’t understand most of the article, I’m not quite sure what it was trying to say so I’m probably not the best person to comment but it sounded like a load of drivel to me, like someone complaining and trying to fill space to promote their book. 

I'm not usually very good at reading these kinds of articles myself, but I have to say that I found this to be one of the most lucid and cogent that I've read on the subject of autism, both as it is often misrepresented in the popular media (exaggerations or misconceptions based on neurotypical understanding) and in terms of how our own voices are often drowned out or passed over whenever we make attempts at explanation.  Yes, you are right that we come to understand each other better by talking and listening, but the conversation often feels like it is only one way.  So I will try to explain to somebody that yes, indeed everyone does suffer with anxiety from time to time, but autistic anxiety is of a completely different variety and can be caused by things that most people would regard as trivial or inconsequential.  This has long been established within the scientific community, with research including brain scans and other kinds of biochemical monitors.  Most often, I find that people still cannot accept the degrees of variation.  I tell lots of people I'm autistic, at which I often receive comments that demonstrate varying degrees of either indifference or incredulity, or perhaps some mild curiosity - as one might be curious about seeing someone in the street with learning disabilities.  Again, this is most likely because of misrepresentations that people have accepted from films they've seen or books they've read, quite often written by neurotypicals and for a neurotypical audience.  The example given of 'To Siri with Love' was a pertinent case in point.  I was outraged when I read that book, and even more outraged by the author's assertion that perhaps 'it wasn't written for an autistic audience'.  This, it seemed, gave her licence to treat the whole thing as something to be laughed at, and her attitude was both arrogant and patronising, and did a gross disservice to autistic people.  If she had written the same about bringing up, say, an adopted black or gay child, there would have been an even bigger outcry about the way she handled the subject.  I'm glad you have found that the people you speak to are always delighted to learn more.  I've found that quite a few people I've spoken to have been the same.  The problem I've usually found, though, is that they are hearing without really listening, so they aren't really learning.  It sometimes feels like I'm simply being humoured, or tolerated.  I would respectfully suggest that you might want to read the article again and try to suspend your judgements about what the author is attempting to convey through it, because she does actually speak a lot of very good sense.  She addresses many of the most relevant issues about 'communication deficit', which is something that most autistic people that I know personally say is their biggest challenge.  It also appears to be an issue that arises an awful lot on the threads on these forums, or so I've observed during my short time here.  I find none of it surprising.

I'm not usually very good at reading these kinds of articles myself, but I have to say that I found this to be one of the most lucid and cogent that I've read on the subject of autism, both as it is often misrepresented in the popular media (exaggerations or misconceptions based on neurotypical understanding) and in terms of how our own voices are often drowned out or passed over whenever we make attempts at explanation.  Yes, you are right that we come to understand each other better by talking and listening, but the conversation often feels like it is only one way.  So I will try to explain to somebody that yes, indeed everyone does suffer with anxiety from time to time, but autistic anxiety is of a completely different variety and can be caused by things that most people would regard as trivial or inconsequential.  This has long been established within the scientific community, with research including brain scans and other kinds of biochemical monitors.  Most often, I find that people still cannot accept the degrees of variation.  I tell lots of people I'm autistic, at which I often receive comments that demonstrate varying degrees of either indifference or incredulity, or perhaps some mild curiosity - as one might be curious about seeing someone in the street with learning disabilities.  Again, this is most likely because of misrepresentations that people have accepted from films they've seen or books they've read, quite often written by neurotypicals and for a neurotypical audience.  The example given of 'To Siri with Love' was a pertinent case in point.  I was outraged when I read that book, and even more outraged by the author's assertion that perhaps 'it wasn't written for an autistic audience'.  This, it seemed, gave her licence to treat the whole thing as something to be laughed at, and her attitude was both arrogant and patronising, and did a gross disservice to autistic people.  If she had written the same about bringing up, say, an adopted black or gay child, there would have been an even bigger outcry about the way she handled the subject.  I'm glad you have found that the people you speak to are always delighted to learn more.  I've found that quite a few people I've spoken to have been the same.  The problem I've usually found, though, is that they are hearing without really listening, so they aren't really learning.  It sometimes feels like I'm simply being humoured, or tolerated.  I would respectfully suggest that you might want to read the article again and try to suspend your judgements about what the author is attempting to convey through it, because she does actually speak a lot of very good sense.  She addresses many of the most relevant issues about 'communication deficit', which is something that most autistic people that I know personally say is their biggest challenge.  It also appears to be an issue that arises an awful lot on the threads on these forums, or so I've observed during my short time here.  I find none of it surprising.

To sell a book or play, the writer needs a target audience, of course anyone in the world who has access to the book can buy it, but you can’t market to the whole world, you have to have a target audience. That doesn’t mean that only your target audience can and will read it, often books are a great surprise and are taken up by an altogether different audience. There isn’t even a publisher on this planet, apart from little ones, who would even consider reading an authors work if they don’t already have a platform because no matter how great a book is, if nobody knows about it, nobody is going to buy it. So you have to have a certain sized social media following or some kind of platform, aka, your target audience, before a publisher will even consider your work. 

So she wrote it for absolutely anybody to read. I’ve never heard of an author doing that before, but there you go, we learn something new every day.

When an author publishes a book, it is public property in the sense that it is available for everyone to read.  All authors throughout history, through Shakespeare, Jonson, Fielding, Smollett, Defoe, Johnson, the Brontes, Austen, Dickens, Trollope, Orwell, Steinbeck, Carver, Cheever, Faulkner, Kerouac, Rowling, Banks, Rankin, and on and on and on and on have written books (or plays) to have them published (or performed) for everyone to read (or see).  Why do it otherwise?  I don't understand how this could have somehow passed you by.  It's what writers do.  They write to communicate.  And once they are published, they can't just say 'I don't want autistic people to read this'.  It's out there.  Which is what they want.  I'm shocked that such a thing has never occurred to you before. 

Sorry, yeah, I’m do miss the point a lot. I thought you or somebody else had said, that she wrote the book for a nt audience, but I clearly got that point wrong. So she wrote it for absolutely anybody to read. I’ve never heard of an author doing that before, but there you go, we learn something new every day. Maybe because it’s a bit of a hot topic but I still didn’t think it would be of interest to that many people, to the degree that you don’t need a target audience. 

I have no interest in reading the book anyway, no matter who she wrote the book for. Reading books about kids is not really my thing. 

We’ve had some good threads on this site on the humorous side of autism, but I understand we all have a different sense of humour so what one person finds funny might be anything but funny to somebody else. I know some of my traits can keep me entertained for hours though.

Oh, I didn’t realise she had abused the child. Did she get the child taken from her? I didn’t realise it was one of those kinds of books. Is that why it caused so much upset, because she abused the child, treating her like she was sub human? Yeah, I can see how the autistic community wouldn’t like that. I couldn’t stomach reading something like that. 

I don’t see it that way at all and of course she would have said the same thing if she had adopted a child or whatever. Why wouldn’t she?

I think you miss the point, again.  She wrote the book for general consumption.  She wrote it about an autistic child.  Why, then, would it not be of interest to an autistic audience?  I for one would want to read it, as I did, to see how she presented the subject of autism and how she managed the welfare of the child.  You would need to read it yourself to understand the outrage that it caused in the autistic community.  It was all, again, about misrepresentation.  About treating autism as something to laugh at, and treat as a subject of ridicule almost.  Why would this not be of concern to any autistic person?  It's an absolute nonsense for her to have said such a thing.  Supposing she adopted a black child and spent an entire book talking about it as if it was some kind of intellectually sub-standard golliwog?  Don't you think the black community  would want to know about that?  Don't you think that an argument of 'I didn't write it for a black audience' would be entirely spurious? 

I don’t see it that way at all and of course she would have said the same thing if she had adopted a child or whatever. Why wouldn’t she? If I’ve got no interest in fishing, I’m not going to buy a book on fishing, so if somebody is going to write a book on fishing, she’s probably better to write it to an audience of people who go fishing. That doesn’t mean the views of people who are not into fishing, don’t count, it just means they won’t be interested in a book on fishing. My mind works differently to the mind of a nt person, so the chances are, that books written with them in mind, aren’t going to interest me, so I’d appreciate knowing that before I picked a book up. 

It’s just different ways of seeing things that’s all and like I said, it’s not the type of book I would normally read anyway. 

Yeah, I told you I’d never met anyone like me and if I had a pound for everyone who’d said that to me, I’d have a nice stash by now.  Now you can see, almost the entire human race, autistic or not, sees themselves as separate from each other. You can see why I don’t do casual conversations very well, lol,  I literally live in a different dimension to almost everybody else. 

And for me, I felt more connected to society once I got my diagnosis, because instead of feeling different, like an alien, this was proof that I was a human being just like everybody else, and it has made me closer to people. I don’t feel like I’m in a minority, I feel like part of the whole of the human race. The diagnosis made feel like one with everybody else. I don’t see myself as being in a minority because of the way my brain is wired up, how would you even break it up? Unless you’re bunching all autistic people in one basket, as if they’re all the same and nt people in another basket as if they’re all the same. But that doesn’t make sense to me because it doesn’t work like that. Just because our brains might be different to people who are nt, that doesn’t mean we’re separate to them. That would be like saying, people from different races are separate, or people in wheelchairs, as if everyone who is in a wheelchair is the same. I don’t really get all those categories, they don’t make sense to me. But I understand lots of you do like those categories, and like Temple Grandin says, the world needs all kinds of minds, so it’s good that we have some variety. 

I haven’t read the book ‘To Siri, with Love’, but if it was written for a nuerotypical audience then it wouldn’t really be for me anyway, so I probably won’t read it.

That isn't really the point I was making about it.  It was written by a mother bringing up an autistic child.  Surely then an autistic audience might have some interest in it.  Why would she say such a thing, anyway?  Why would anyone write a book for general consumption and then say that it perhaps wasn't written for an autistic audience?  Would she have said the same if she had been bringing up an adopted black child or a gay child?  it's incredible arrogance.  It's saying the views of autistic people don't count when the book has an autistic person at its very centre.

I didn’t know people did live in a them and us world but I can understand that if they do, it can’t be very nice for them.

The entire human race lives in a them and us world, based on all kinds of inequalities.  Money, race, ability, caste, access to resources, class structures and so on.  It isn't very nice for very many of them, especially if they are starving or homeless whilst some individuals own more wealth than the GDP of entire countries.  But on the basis that we're talking about, yes.  Many people on the autism spectrum feel left out, which is only to be expected when they're in a minority in a world that doesn't really seem to care about any struggles they may be undergoing because of their condition.

I didn’t know people did live in a them and us world but I can understand that if they do, it can’t be very nice for them.

Before I got my diagnosis I felt very separate to other people, to the point where I honestly felt like I was maybe an alien from another planet because I was unlike everybody I met. And that didn’t feel good so I can understand people not liking living in a world where they feel separate to others and it’s like them and others. 

As soon as I got my diagnosis, I instantly lost that feeling of being different and separate. I felt that I’m just like everybody else after all. I’m a human being just like everybody else. And I’ve never looked back. So yeah, I do understand what it’s like to live in a world where you feel different and separate to other people. My diagnosis changed all that for me. 

It’s funny because I spend way less time with other people, since I got my diagnosis, yet I feel more connected to people than I ever have before. Life is so much less scary now and I now know, that wherever I am, I just have to tell people I’m autistic, and they help me. I don’t have to hide my confusion any more or pretend that I know what I’m doing or that I have to do it all myself. And what I love about people, is that when I tell them I’m autistic, can you help me with this or whatever, even the young ones, they treat me with so much respect and not as if I’m a disabled person, but as if I’m an equal and that it’s perfectly ok and normal that I get overwhelmed in shops and might not be able to find something without help or whatever. It’s like it’s not even a thing and certainly not a big deal at all, if I get a bit overwhelmed and need some help, so I can see that it was me who had been making it into such a big deal in my head for all those years, before I got my diagnosis. People are always more than happy to help me and they say that they can get easily overwhelmed etc as well. They get overwhelmed for different reasons but they understand what it feels like and they are always so lovely and seem to genuinely want to help. So yeah, my life is so much better now in so many ways since I stopped feeling different and separate to people. It’s so much nicer to feel so connected to people. 

I don’t really know how autism is presented in popular media as I don’t have much to do with that side of life, but I do know what you mean about one sided conversations. I seem to have a lot of those even though I do encourage others to speak as well, but they mostly seem more intrigued and fascinated and interested with what I have to say and they love learning about autism. So I don’t try to dominate conversations on purpose, people seem to just like listening to me but on the topic of autism, I find I usually know more than most people I talk to so I guess it stands to reason that I would be the one doing most of the talking.

I haven’t read the book ‘To Siri, with Love’, but if it was written for a nuerotypical audience then it wouldn’t really be for me anyway, so I probably won’t read it.

I find, almost without exception, that people love hearing about autism. They’re usually fascinated to find out that I’m autistic, as they didn’t realise it was so diverse and they had the same kind of impression that I had, before I got my diagnosis, that people with autism have some kind of learning difficulty as well. I find they really listen and they ask some wonderful questions which helps me to understand myself and them better, as well.

I haven’t really got a judgement on the article because I couldn’t understand it. It seemed like a lot of big words, to me, that didn’t really mean anything much at all, but that’s probably because I’m very blunt, direct and honest when I speak and I appreciate it when people talk to me in the same manner so I often require some support to be able understand articles like this one. I need somebody to break them down for me and put them into more simple, more direct words that I can understand.

I’m glad you found the article helpful though. It sounds like popular media needs more articles like this.

PS By division, I think Starbuck means that we don't want to live in a them and us world of NDs and NTs.  There are enough divisions in the world as it is.  The 'division' as I see it is largely a one-way gap of understanding.  This gets demonstrated to many of us each day of our lives, with for example an expectation that we will all be quite capable of sharing an environment that might trigger anxiety or meltdowns for an autistic person.  It's also seen in the other thread I mentioned, where the person said they were being discriminated against at work and told that all staff members have their issues.  Yes, this is true.  But in most workplaces (outside of Silicon Valley perhaps) I doubt that most employees are autistic.