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B19
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31 Oct 2014, 1:23 am

I wouldn't go as far as that. Basically your view is: limitations = barriers = autism = disability and unless an ASD person advocates from this basis, they can't be expected to be taken seriously.

People can advocate from a neurodifference perspective and have, and have been taken seriously.

I respect your opinion though it seems to me you are stating that opinion as fact.

Everyone faces limitations and barriers in life. I think there is a greater risk of us not being taken seriously when we endlessly harp on about ours, to the exclusion of all else, as though ASD conferred not a single positive thing, and gives the impression that we all totally lack the capacity to participate in "normal" life.

I am relatively near the end of my life, in retirement, I have participated fairly fully in "normal" life - career, family etc - and although it may have been harder for me to do that than NTs, and required more dedication on my part, I don't consider myself to be defined by your equation of limitation = barriers = autism = disability. Of course there were barriers I had to overcome. But the barriers were external, not part of my personal identity.

I don't ask or expect you to agree with me (you won't) and we will have to agree to disagree here.



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31 Oct 2014, 1:33 am

Mostly I believe in having nuanced and gray discussions instead of black and white ones. Sorry if I come across as if I believe I hold the sole facts; that would be because, I guess, I'm "selling," in a way, when I write.

My father lived a full life, but not the one he had the potential to, and I saw how that ate at him; I don't think he ever understood WHY so many things didn't seem to go his way (he was never diagnosed with ASD, but I am POSITIVE he was). He was limited by his quirks. A disability doesn't have to stop you to be a disability; it might just send you on a detour, instead.

I have hearing loss. But most people will never know it or notice it. I still go to concerts and plays and movies and meetings and talk on the phone, etc. But everything is "less" for me now, since hearing aids can never restore normal hearing. No one would argue that my hearing loss is NOT a disability. So what is so different? That, really, is all I am asking people to think about.


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31 Oct 2014, 7:51 am

DW_a_mom wrote:
You can't be ASD without having difficulty with social cues; pretty core to the diagnostic criteria. Sensory issues are a big one in diagnosis, as well. And the IQ scatter. Can you honestly say that none of those issues have ever created a barrier in your life? Of course they have, just like my disabilities have created barriers in mine.

We shouldn't be hiding from that, and we can't get taken seriously by those we are trying to forward our advocacy to if we do.


lol It would seem that you think I'm just trying to cover up "who I really am" by saying I don't have a disability. I speak the truth when I say I don't have a disability, that's not hiding or being shameful. To answer your question. Yes, I can honestly say that AS doesn't create barriers, perhaps you can give some examples. Any barrier that pops up, has always been an external one and never came about "because of AS", I'll give you an example:

To get my drivers licence, it was one hell of an epic journey, one bastard of an uphill battle. When I mention that to people, they usually assume "because of AS" that a manual would be too hard, when no that wasn't the case, my driving was immaculate, almost. Somehow, they managed to get wind of the word "Asperger's" and they were genuinely concerned for the safety of their driving instructors. It took me ages, but I had to jump through all sorts of hoops to prove I wasn't some violent psycho poised to fly off the handle at any moment. It wasn't until much later I would find out why, after watching shows like Dr Phil where you witness the sorts of shocking violence being portrayed, and it's always a little kid that represents me.

You mentioned social cues, ok, I'll talk about that for a bit. You're essentially talking about a breakdown in communication and understanding between two people, it's not exclusively that one person cannot communicate properly. Our crew, we're a social group, and we don't have problems with communication. Yes, AS people don't do the same level of non-verbal that NTs do. But for NTs, it's not just using "body language" and expecting everyone to know what's going on, (personally I find that part rarely causes problems). NTs have this problem of filling in the blanks, they "read between the lines" when there's no hidden meaning in what you say, or they make up their own meaning out of the "body language" that isn't there. Even if you do absolutely nothing, NTs still can't help but do this, it's "I can't see anything non-verbal", "I assume it might be...", but then they make the jump to "my assumptions are correct, and nothing can dissuade me" without getting any kind of confirmation. So you see, that from my perspective, it's NTs that have a very limited capacity for understanding.

It's not that one is superior than the other, or that one is broken, it's that they're two modes of communication that are not very compatible with each other. It's like trying to get your Windows machine to network with your Macbook pro.

I disagree, it's part of ones identity, where you're Aspergian, and not an NT that carries around a disability. I think the opposite is true, I don't think we'll be able to achieve peerage with all these misconceptions and stigmas bogging us down.



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31 Oct 2014, 10:54 am

Example: My son overloads easily, it is a processing issue. Part and parcel to the diagnostic criteria for ASD. He has the intelligence and interest to be in every AP class offered and to thrive in a top tier university. But because of the overload, he can't handle the workload. He can't allow himself to get stressed because, if he does, he will meltdown. In meltdown, you aren't in control and he is terrified of what he might do in a meltdown; when he was little he was quite self-destructive in meltdowns, and he has learned to recognize the signs leading into them and self-calm. And a lot of work load creates those signs. So he had to drop one of his AP classes even though he really wanted to cover that material, and he often has to leave homework unfinished, which hurts his grades and, thus, his chances of getting into the university he wants. The ASD in this way is keeping him from doing what he otherwise wants to do and is capable of.

You know, he's growing up in a community that 100% accepts him and is willing to meet him on his terms. He has thrived, he really has. Because of that, we get to see what is from the ASD in pretty pure terms. I know that in most of the world that isn't true, and the outside barriers are so many that it becomes impossible to know if there are any internal ones, but we've been lucky to face very little of that. The barriers my son is running into are internal and clearly ASD related. And this is a super high functioning kid that the school considers a model for special needs success, who graduated from his IEP and all services.

We aren't the only ones. There is a reason he can apply for and get a special room and extra time on his SAT.

I agree that in most of the world the perception battle is still the most important one to fight. But at some point we have to accept that the condition is diagnosable for a reason. I'm not an ignorant parent who doesn't already know all the points you've made. I've been in this community for years and was a moderator here for a while; I used to believe the mantra whole heartedly. I understand my son and have gotten the world to meet him on his terms. But now we can see that even with all that, there really is more. I didn't want it to be that way, but it is.


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31 Oct 2014, 1:25 pm

DW_a_mom wrote:
To recognize something is a disability is not the same as saying it is a sickness, or even something that needs to be fixed. The word is pretty simple, it reflects not being able to do something.

Sure, lots of people have various forms of disability. But most of us are willing to SAY that our difficulties in a particular area are a form of disability.

I've been on this forum long enough to realize that despite all the things people state, their ASD HAS made many aspects of their lives more difficult. WHY is it such a negative thing to admit that? That is NOT the same as saying a person can't do things. It is NOT the same as saying a person isn't amazing in other ways. Shoot Stephen Hawking is disabled, is he not? A more appropriate fight is to say, "OK, maybe I have some minor areas of disability, but THEY DO NOT DEFINE ME."

I, personally, have several disabilities. None of them diminish who I am, but they do explain why I can't do certain things.

You can't be ASD without having difficulty with social cues; pretty core to the diagnostic criteria. Sensory issues are a big one in diagnosis, as well. And the IQ scatter. Can you honestly say that none of those issues have ever created a barrier in your life? Of course they have, just like my disabilities have created barriers in mine.

When my son was younger I loved the mantra of this community, just talking about how ASD is neurologically different, and he still will have an amazing life. And he WILL have an amazing life. But despite all the services and help he has had, despite his high IQ, despite how extremely high functioning he is, we've been down this path long enough to see EXACTLY what doors are closing to him because of aspects created by the ASD. Not prejudices, just things he can not do. I don't have a low functioning child that I worry will never be independent; I have a smart, creative, "together" kid. And he LOVES being ASD; that is fully his identity, and he's comfortable in his own skin. But all that also means he is smart enough to know exactly when and where and how his ASD HAS created limitations for him. We should be the poster family for simple nuero-diversity, ASD not being a disability, but that would be a lie. At some point we had to stop lying to ourselves and just say, "yeah, sorry, I guess that is something you will never be able to do, even though you would like to." Sure, NTs run up against that, too, depending on what their unique skills and weaknesses are, but when there is a name to the problem, why not use it? When I talk to curabies and am trying to get them to change their thinking I still play mostly the acceptance and "just different" cards, because that is what they need to hear. But often I feel that what this community needs to hear is what I've written here. Nuerodiversity is great, but there are things that your ASD means you cannot do. We shouldn't be hiding from that, and we can't get taken seriously by those we are trying to forward our advocacy to if we do.


Well put. It is both a disability and unique way of being/personality trait, and those aren't mutually exclusive.



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31 Oct 2014, 5:33 pm

DW_a_mom wrote:
Example: My son overloads easily, it is a processing issue. Part and parcel to the diagnostic criteria for ASD. He has the intelligence and interest to be in every AP class offered and to thrive in a top tier university. But because of the overload, he can't handle the workload. He can't allow himself to get stressed because, if he does, he will meltdown. In meltdown, you aren't in control and he is terrified of what he might do in a meltdown; when he was little he was quite self-destructive in meltdowns, and he has learned to recognize the signs leading into them and self-calm. And a lot of work load creates those signs. So he had to drop one of his AP classes even though he really wanted to cover that material, and he often has to leave homework unfinished, which hurts his grades and, thus, his chances of getting into the university he wants. The ASD in this way is keeping him from doing what he otherwise wants to do and is capable of.

You know, he's growing up in a community that 100% accepts him and is willing to meet him on his terms. He has thrived, he really has. Because of that, we get to see what is from the ASD in pretty pure terms. I know that in most of the world that isn't true, and the outside barriers are so many that it becomes impossible to know if there are any internal ones, but we've been lucky to face very little of that. The barriers my son is running into are internal and clearly ASD related. And this is a super high functioning kid that the school considers a model for special needs success, who graduated from his IEP and all services.

We aren't the only ones. There is a reason he can apply for and get a special room and extra time on his SAT.

I agree that in most of the world the perception battle is still the most important one to fight. But at some point we have to accept that the condition is diagnosable for a reason. I'm not an ignorant parent who doesn't already know all the points you've made. I've been in this community for years and was a moderator here for a while; I used to believe the mantra whole heartedly. I understand my son and have gotten the world to meet him on his terms. But now we can see that even with all that, there really is more. I didn't want it to be that way, but it is.


And I'm not some ignorant Aspergian that hasn't been outside, espousing some mantra I saw somewhere. We've already been though all this, ages ago. To see it drudged up again is quite odd, stranger still is the accusation that I would, for some reason, be using it as a cover story.

No, your logic is off. By your logic, every single NT is disabled -- That's just not the case.

Ok, he's not suited to that situation. Which is understandable, given that it's a WW2 dinosaur hand crafted to suit NTs. That doesn't mean there's an internal problem that disables you, it means you're not suited to that particular situation. There are situations, I'm sure, where NTs are not suited to it, everyone has their limitations, and everyone has their problems, inability to focus comes to mind, that doesn't mean they're disabled. It's not "Well damn, we found a situation that doesn't suit you, guess that means you have a disability." No, this is nonsense.

Dx, therefore, disability now? Really? You're really going to take this into semantics land now?

I think peerage is far from possible, when you have one side pointing fingers at the other, saying that their problems are because of them, and concluding that they're found wanting.



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01 Nov 2014, 12:50 am

I have no idea where you get the idea that I might be suggesting you've got a cover story. If that somehow came across, it was a mistake.

I don't want to argue about this, although I did want to make a point. It is still pretty raw here, the realization that, "wow, son, what you have just described to me IS a disability." As a parent I want EVERYTHING for my child, and we've just run smack into a wall that will exist his entire life.

Who knows if that wall be would be there in an entirely different society; we don't have the luxury of living in a completely different world, now do we? In the world that he will have to make his life in, he is limited from reaching his own goals and dreams by factors related to his ASD. Simple fact. A pretty depressing realization to come to, but we recently have. And I HATE it. He has an easier time accepting it than I do, and maybe that is my problem, but I see all that potential, all that ability, all those gifts, and like all parents I had hoped he would have an easier go of getting those recognized than all the family that has gone before him. But he won't, for what really amounts to the same reason that has hindered all the family that has gone before him. It isn't a crisis, but it is the loss of hope, of what every parent wants for their kids: that they have it better than we did.

And I have no problem saying that maybe most people are disabled in some way. I don't have a problem acknowledging that because most people don't let their disabilities define them. So my son and I found ourselves in a conversation realizing that, "wow, that IS a disability." It isn't like we've written off his life; he isn't letting it define him. But we had to put that label on it so he could know what road to take next. You don't go down roads you don't have the right tools for, that is just common sense.

As I said, maybe I'm just extra sensitive on it right now, because this is something that really hit us just this week. He's at the age he has to make choices that are likely to set the rest of his life. And the roads he would most like to take, well, he doesn't have the tools for them, and the reason is his ASD. It isn't an easy place to be.

.


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01 Nov 2014, 1:36 am

This thread has meandered a long way from where it began, so since we are already off topic:

While reading the last few pages here, what I kept remembering was the most inspirational school teacher I ever had. We were 8 years old, and she told us the ultra-inspiring story of Helen Keller - and how the life of this "deaf-mute" changed because one person believed in her latent ability, and Helen seized that chance and made the absolute most of it, becoming the first person who was both deaf and mute to graduate with a university degree.

I know many people at WP will not have heard of Helen Keller - before their time - though you can look her life up on Wikipedia, if you are interested.

Also what has come to mind for me during this thread is an inspirational quote from Sir Nicholas Winton: "I believe that if a thing isn't absolutely impossible, then there must be a way of doing it".

Both of their life stories illustrate for me "possibility versus impossibility thinking". We have different views on that at WP, which this thread has comprehensively depicted.



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01 Nov 2014, 4:08 am

DW_a_mom wrote:
I have no idea where you get the idea that I might be suggesting you've got a cover story. If that somehow came across, it was a mistake.

I don't want to argue about this, although I did want to make a point. It is still pretty raw here, the realization that, "wow, son, what you have just described to me IS a disability." As a parent I want EVERYTHING for my child, and we've just run smack into a wall that will exist his entire life.

Who knows if that wall be would be there in an entirely different society; we don't have the luxury of living in a completely different world, now do we? In the world that he will have to make his life in, he is limited from reaching his own goals and dreams by factors related to his ASD. Simple fact. A pretty depressing realization to come to, but we recently have. And I HATE it. He has an easier time accepting it than I do, and maybe that is my problem, but I see all that potential, all that ability, all those gifts, and like all parents I had hoped he would have an easier go of getting those recognized than all the family that has gone before him. But he won't, for what really amounts to the same reason that has hindered all the family that has gone before him. It isn't a crisis, but it is the loss of hope, of what every parent wants for their kids: that they have it better than we did.

And I have no problem saying that maybe most people are disabled in some way. I don't have a problem acknowledging that because most people don't let their disabilities define them. So my son and I found ourselves in a conversation realizing that, "wow, that IS a disability." It isn't like we've written off his life; he isn't letting it define him. But we had to put that label on it so he could know what road to take next. You don't go down roads you don't have the right tools for, that is just common sense.

As I said, maybe I'm just extra sensitive on it right now, because this is something that really hit us just this week. He's at the age he has to make choices that are likely to set the rest of his life. And the roads he would most like to take, well, he doesn't have the tools for them, and the reason is his ASD. It isn't an easy place to be.


So you don't remember posting about how we shouldn't be hiding from our "disability".

Oh, I sure as hell don't want to argue either. Arguing with someone that has abandoned all logic and reason, is like administering medicine to the dead.

Yeah, and every other human being alive, also has limitations, simple fact. What your wall metaphor is describing, applies to everyone else, simple fact. But you're not going to read any of this are you, I thought I explained it quite sufficiently in the last post. I mean really, do we not have enough stigmas. That you would have no problem telling people that clearly aren't disabled, that they're disabled in some way, is troubling. Most people would find you saying that about them rather strange.

For everyone else, here's where she mistakenly propped up the consequent:

If an AS person is disabled, then that is a limitation.
AS people have limitations.
Therefore, AS people are disabled.

If a person is disabled, then that is a limitation.
Everyone has limitations.
Therefore, everyone is disabled.



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02 Nov 2014, 11:13 pm

Mormillas, I've read your post, but either I am not getting my point across, or you insist on misunderstanding it. You want to fight, it seems, because you use fighting words. I want to debate and figure out the nuance and maybe reach some reasonable middle, figure out what I'm supposed to think now and what it all means, given that I HAVE come to realize that the militant position isn't really solving anything for my family, at least. Regardless, we are obviously at an impasse, and your personal attack was uncalled for (I consider suggesting that I've abandoned all logic and reason to be a personal attack, yes).


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02 Nov 2014, 11:14 pm

B19 wrote:
This thread has meandered a long way from where it began, so since we are already off topic:

While reading the last few pages here, what I kept remembering was the most inspirational school teacher I ever had. We were 8 years old, and she told us the ultra-inspiring story of Helen Keller - and how the life of this "deaf-mute" changed because one person believed in her latent ability, and Helen seized that chance and made the absolute most of it, becoming the first person who was both deaf and mute to graduate with a university degree.

I know many people at WP will not have heard of Helen Keller - before their time - though you can look her life up on Wikipedia, if you are interested.

Also what has come to mind for me during this thread is an inspirational quote from Sir Nicholas Winton: "I believe that if a thing isn't absolutely impossible, then there must be a way of doing it".

Both of their life stories illustrate for me "possibility versus impossibility thinking". We have different views on that at WP, which this thread has comprehensively depicted.


This is helpful. Thank you.


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03 Nov 2014, 12:43 am

DW_a_mom wrote:
Mormillas, I've read your post, but either I am not getting my point across, or you insist on misunderstanding it. You want to fight, it seems, because you use fighting words. I want to debate and figure out the nuance and maybe reach some reasonable middle, figure out what I'm supposed to think now and what it all means, given that I HAVE come to realize that the militant position isn't really solving anything for my family, at least. Regardless, we are obviously at an impasse, and your personal attack was uncalled for (I consider suggesting that I've abandoned all logic and reason to be a personal attack, yes).


Except it's not a personal attack when your arguments HAVE abandoned all logic and reason, that's a statement of fact.

Oh really? I've just misunderstood it all, and yet you would think that I want a "fight". smh

No we're not at an impasse, you refuse to accept the facts, it's as simple as that.



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03 Nov 2014, 2:22 am

Moromillas wrote:
DW_a_mom wrote:
Mormillas, I've read your post, but either I am not getting my point across, or you insist on misunderstanding it. You want to fight, it seems, because you use fighting words. I want to debate and figure out the nuance and maybe reach some reasonable middle, figure out what I'm supposed to think now and what it all means, given that I HAVE come to realize that the militant position isn't really solving anything for my family, at least. Regardless, we are obviously at an impasse, and your personal attack was uncalled for (I consider suggesting that I've abandoned all logic and reason to be a personal attack, yes).


Except it's not a personal attack when your arguments HAVE abandoned all logic and reason, that's a statement of fact.

Oh really? I've just misunderstood it all, and yet you would think that I want a "fight". smh

No we're not at an impasse, you refuse to accept the facts, it's as simple as that.


Just because you aren't following my reason or logic, does not mean it is not there. Spend time in PPR and you quickly realize that many extremely opposiong paths can all be forged in the name of reason and logic.

And we aren't dealing with facts, we are dealing with OPINION. The issue you and I have been debating is entirely one of perception and opinion. Historic dates and mathematical equations are facts. When a difference crosses the line to possible disability, and whether or not accepting that the word might sometimes apply to a limited number of situations is OK? Not so much.

All that said, I got the point pages ago. The word isn't acceptable to you, period, even as a way of describing small ways a person's ASD may limit their choices because, as you correctly pointed out, most people have some characteristic that limits their choices. So what, then, should the discussion be when the Church creates this forum on how to serve the needs of the ASD community? How do you want to phrase the issues that many with ASD face in having their gifts recognized in the school system, keeping a job, and so on? There ARE things that this community wants the greater NT world to acknowledge and allow for; so what phrasing do we use when asking? I'm not fond of the word "disability," either, but it gets the dialogue going, of someone willing to say, "what do you need from me so that you can succeed?" Even if the answer is as basic as, "could my co-workers not hold it against me when I don't want to go bar hoping with them?" That dialogue DOES need to happen, would you not agree, seeing the host of issues that members of Wrong Planet post about?


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03 Nov 2014, 2:49 am

DW_a_mom wrote:
Just because you aren't following my reason or logic, does not mean it is not there. Spend time in PPR and you quickly realize that many extremely opposiong paths can all be forged in the name of reason and logic.

And we aren't dealing with facts, we are dealing with OPINION. The issue you and I have been debating is entirely one of perception and opinion. Historic dates and mathematical equations are facts. When a difference crosses the line to possible disability, and whether or not accepting that the word might sometimes apply to a limited number of situations is OK? Not so much.


Yeah, there's my opinion, which is correct and based on facts, logic and reason. Then there's your opinion, which is incorrect and based on metaphors, fallacy and anecdotes.

There's no debate here. Your question, is ill formed, it's not a valid way to determine if someone is disabled or not.



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03 Nov 2014, 3:17 am

An issue that I think squarely belongs on the agenda for that conference is the obvious one of economic exclusion.

The imposition of recruitment practices designed for NTs by Nts are very discriminatory against the whole group on the spectrum - perhaps amounting to millions of people worldwide.

The complete failure, thus far, to acknowledge ASD needs and offer options at recruitment effectively ensures ecomonic oppression.

Nt's show their bias for their own kind clearly- the preference for oral interviews, panels with everyone expecting eye contact, open questions, more than one person firing questions at you.. ASD people have never been considered at all as to how to level the playing field. Perhaps because they don't want to employ people they privately label in insulting ways.

This is an urgent and very neglected issue: how to extend equal opportunities based on talent, ability to do the job, training etc. to candidates on the spectrum. We are not all geeks who can work in silicon valley.

Meanwhile the invisible gatekeeping continues, unchallenged and accepted as "that's just the way it is" - which translates to "and that's the way we Nts like it".

If you don't even recognise the right of people to basic equal rights like this, forget about all the hot air about how to offer support etc;
when people who say they want to "help" and then ignore the core things like equal rights, they just comes across to me as hypocritical
and if they extended equal employment opportunities to us, then there would be much less need for NT "support and help".

Help is often the sunny side of control, especially when practiced by dominant groups on minority groups.

Secondly, this conference needs to deal with the issue of stigmatisation of ASD people which - again - the NT's who want to "help" us at the conference will no doubt ignore. Oppression thrives when priorities that serve the dominant group underlie initiatives like this conference. Excluding ASD people simply underlines what the real agendas are.



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03 Nov 2014, 4:35 am

DW_a_mom wrote:
So what, then, should the discussion be when the Church creates this forum on how to serve the needs of the ASD community? How do you want to phrase the issues that many with ASD face in having their gifts recognized in the school system, keeping a job, and so on? There ARE things that this community wants the greater NT world to acknowledge and allow for; so what phrasing do we use when asking? I'm not fond of the word "disability," either, but it gets the dialogue going, of someone willing to say, "what do you need from me so that you can succeed?" Even if the answer is as basic as, "could my co-workers not hold it against me when I don't want to go bar hoping with them?" That dialogue DOES need to happen, would you not agree, seeing the host of issues that members of Wrong Planet post about?


For therein lies the crux.

Is it best to use the word disability just to get what we want, to alter their perceptions, try and put the idea in their head that we need more support. We could keep saying that we're disabled and need a pension to live, but that would be a lie. What we need is parity with NTs, they've a massive amount of community support, a massive leg up, and we've naught. No, not naught, we can lie our asses off, call ourselves disabled, and collect a pension.

That pension, is nothing short of an insult.

It is a pittance compared to what NTs get. We can't live without it, because we don't have peerage or parity, and they won't want to provide real solutions, because to them, we're of no value, we're not worth doing that. Lets just provide them with just enough so as they don't starve, just to shut them up, so I don't have to deal with bad PR. And what kind of life is that to live, just sit our asses waiting for the taxman to show up and toss us a pittance.

For education, they need to recognise that AS people are not suited to perform well in NT schools. To realise that all that socialising is a bucketload of extra work, and they need to factor that into scores that determine your future, like SAT scores.

A real solution is needed for meltdowns in NT schools, not just sending them home early when they can't cope, or keep cutting out subjects.

The infrastructure that exists supports only the NT community. The idea of AS schools is a sound one, and should be seen as a solid investment, not met with skepticism. Build more schools that are designed for and suited to AS people, we have a veritable ton of NT schools, and next to nil AS ones. This is (I believe) a step in the right direction when it comes to closing the gap between the amount of support NT and AS people get.