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.

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. 

No apology necessary pietro_21 

Autistic people seem to me to often value fairness, justice and honesty perhaps more than society as a whole serves up.

Maybe it's "black or white" thinking or naievity.

If the experience that you describe is based upon not having had much experience of how public bodies work I empathise - been there lived that myself.

When the smoke clears and if like me there is the temptation to challenge and attempt to "right the wrongs" by campaigning against them please consider this:  to save grief I suggest it is first worth considering does it pass the "widely felt, deeply felt and winnable" test.  I have banged my head against issues myself that don't pass that test and bear the psychological scars as hard earned lessons.

If you do want to campaign against what you are encountering then what to work on is creating circumstances where the test may be passed.  Seek support to do so and be prepared for a marathon.

All the best.

No apology necessary pietro_21 

Autistic people seem to me to often value fairness, justice and honesty perhaps more than society as a whole serves up.

Maybe it's "black or white" thinking or naievity.

If the experience that you describe is based upon not having had much experience of how public bodies work I empathise - been there lived that myself.

When the smoke clears and if like me there is the temptation to challenge and attempt to "right the wrongs" by campaigning against them please consider this:  to save grief I suggest it is first worth considering does it pass the "widely felt, deeply felt and winnable" test.  I have banged my head against issues myself that don't pass that test and bear the psychological scars as hard earned lessons.

If you do want to campaign against what you are encountering then what to work on is creating circumstances where the test may be passed.  Seek support to do so and be prepared for a marathon.

All the best.