Getting together with a research request

The whole thing is a bit of a farce if you believe that what people are doing or researching has no impact. By that who are they asking the questions for or about  (I have found very few insightful studies about autistic behaviour, that are not written or devised by some who is or is related to someone who has autism). Those questions only come from seeing the nd as equal humans The empathy to ask the right questions (about late/self/unyet diagnosed) doesn't exist at the moment. 

I have had two incidents recently - one was an app designed for autists which was like a computer game for a five year old, very repetative and misunderstood in design (called Molehill). Or I completely missed the target audience. Another time recently I was approached by a bot online who realised I was autistic then started repeteting everything I was saying and not answering any questions about itself. If you want to engage, engage, if you dont or feel vulnerable in your own experience dont. You are also training the machine everytime you type, so keep your views and your questions to yourself if you value them.

I am really stressed at them moment that I fall outside the net for most services, I have been diagnoses a serious life changing condition which I myself have to define as a disability then get penalised for socially if I do. It's actually hilariously funny how apathetic society is in general. Great if you like being by your self though!! It is funny but also deeply disturbing that all of this asking questions about us is also a huge business and job creation for nt people everywhere  The proof is in how much changes or whether it just another false economy and we all become a lost ASD generation. This is what brings me down the most more that the weather, that noone really looks at what the big problem is.

{greater societal apathy towards disability}

I agree with you that there is widespread societal apathy towards disability.  pietro_21 and that it is greater towards "invisible" disabilities and more evident towards mental health and learning disabilities. Personal experience and research evidence shows this.

This makes for a problem when people seeing the bigger picture - especially when public concern is focused on cost of living, global warming, increasing risk of global war - not to mention the appeal of the global marketing, entertainment industry, petty feudal bigotry etc. Or just dealing with their own stuff in a complex and challenging social madhouse.

It's for this reason that your concern about limited research by autistic people to accurate reflect autistic concerns is especially valid.

I suspect that many researchers on the topic are themselves autistic and it may be that they are not overt in this.

For the very reasons you state getting organised as autistic people to lobby and engage for what we want and need is especially important.

Other socially repressed groups have progressed their case, representation and place in society.

Maybe so can we.

All the best.

I agree with you that there is widespread societal apathy towards disability.  pietro_21 and that it is greater towards "invisible" disabilities and more evident towards mental health and learning disabilities. Personal experience and research evidence shows this.

This makes for a problem when people seeing the bigger picture - especially when public concern is focused on cost of living, global warming, increasing risk of global war - not to mention the appeal of the global marketing, entertainment industry, petty feudal bigotry etc. Or just dealing with their own stuff in a complex and challenging social madhouse.

It's for this reason that your concern about limited research by autistic people to accurate reflect autistic concerns is especially valid.

I suspect that many researchers on the topic are themselves autistic and it may be that they are not overt in this.

For the very reasons you state getting organised as autistic people to lobby and engage for what we want and need is especially important.

Other socially repressed groups have progressed their case, representation and place in society.

Maybe so can we.

All the best.

I recently took up a voluntary role on the board of a public body. I am really conflicted at the sudden realisation I had last week that many of these partners organisations some are CICs but most are simply new arms of companies aiming to milk it. I am considering my position because I cannot morally stand by that, if a charity or public service does not see that (who the service is fundamentally for). Beyond words how gutted I am at the moment. Sorry lots going on in my mind.

Hi pietro_21 

I think you sound realistic in your assessment and that can appear negative as the assessment is of a pretty poor situation (having to self censor for profanity there!).

The issue of whether one appears apathetic relates to how one engages with organising to do something about it.

I suspect that there is a neurodivergent tendency to see the bigger picture as you put it and "Jobs for the boys and girls" is part of this.  People have their own needs and they meet them how they can.

In respect of exploitation - the only difference between slavery and employment is that an employee can withdraw their labour.  Meantime those who are ethical enough and have the good fortune (or stupidity sometimes!) to work to values that promote fairness and equality do what they can in often challenging situations.

I am reasonably happy with equality legislation - the problem lies in enacting it.

hi Phased,  it is an understatement to say there is disability injustice that exists. I don’t mean to sound negative or apathetic. My experience recently is that these topics and investigations into autistic people are not deeply thought out some almost look down or ask facile questions. My question to researchers is why might x ASD person not feel the same way as you, or be in any way limited in their feeling about the world? That coupled to where this knowledge feeds back into is largely a job industry creation to for neurotypical people. So again we are being cut out of another industry which is being build around us and our needs, that is exploitation. Because I see people now turning a blind eye to this facile ‘care’ machine. I just don’t feel like equality laws really do go far enough.