Imposter syndrome and difficulty researching things

Me and you both, I totally understand where you're coming from, there's both to much information and not enough, everything seems designed to obfuscate and stop you getting anything at all. When I did manage to find a support group all they seemed concerned with was had I got the right benefits. I think I was insufficiently grateful for what small nuggets thay did finally cough up, and they couldn't cope.

You phrased that really well, there is too much information and not enough. There is so much to look through, I don't know how to focus the research to what's relevant, so it then feels like the right information isn't out there.

I agree, such a good phrase and sums up how overwhelmed I was when I was diagnosed. There were so many books, websites, YouTube videos etc. I just pretty much read and watched things at random. I don't think I have learned much in the last few months, but it was good to know that I wasn't actually alone. 

I don't use You-Tube and I wouldn't know where to begin with it, but I suspect it's rather like books and other literature, read the back and it sounds great, get inside it and its all for parents and children and mostly American parents and children too. Although I wonder how many American parents and children find it useful as different states will have different policies.

I think the only book I found that told me anything was The Gendered Brain by Gina Rippon, when I was diagnosed being an autistic woman was rare and that was only 12 years ago. I don't know how much the research has changed in those years, but it gave a lot of information about how research is carried out, how people are allowed to basically set the agenda for all further reseearch and diagnosis and what tiny samples they use. When you think of research, I'm sure most people think of big studies involving hundreds if not thousands of people, not a couple of dozen! A meta study, a study of all the research say in a five year period, can in reality be a study of about 100 or so people, in different countries who all use the same methodology. Anyone not using the same methodology will usually be excluded as the result will be judged as unreliable.

It's no wonder were all confused and don't know where to turn to for help. I look at FAQ's and wonder if people really ask these questions as they seem to be aimed at 5 year olds!

I think another big issue is that nobody really seems to know where ASD sits in a medical and educational model of well being. Some of us will have medical needs related to our ASD, others will have medical needs that aren't, some have educational needs some don't. It seems to me that what we lack is any sort of joined up approach and the organisations that do exist don't seem to know about others or who to refer you to, let alone fascilitate a referal. It seems they all prefer to sit and talk about the right way of refering to us at the expense of actually doing anything useful. To be honest I think the services that I've encountered are a waste of public money, I think the money could be better spent elsewhere and in a time of straightened public finances this makes it seem worse than ever.

I don't use You-Tube and I wouldn't know where to begin with it, but I suspect it's rather like books and other literature, read the back and it sounds great, get inside it and its all for parents and children and mostly American parents and children too. Although I wonder how many American parents and children find it useful as different states will have different policies.

I think the only book I found that told me anything was The Gendered Brain by Gina Rippon, when I was diagnosed being an autistic woman was rare and that was only 12 years ago. I don't know how much the research has changed in those years, but it gave a lot of information about how research is carried out, how people are allowed to basically set the agenda for all further reseearch and diagnosis and what tiny samples they use. When you think of research, I'm sure most people think of big studies involving hundreds if not thousands of people, not a couple of dozen! A meta study, a study of all the research say in a five year period, can in reality be a study of about 100 or so people, in different countries who all use the same methodology. Anyone not using the same methodology will usually be excluded as the result will be judged as unreliable.

It's no wonder were all confused and don't know where to turn to for help. I look at FAQ's and wonder if people really ask these questions as they seem to be aimed at 5 year olds!

I think another big issue is that nobody really seems to know where ASD sits in a medical and educational model of well being. Some of us will have medical needs related to our ASD, others will have medical needs that aren't, some have educational needs some don't. It seems to me that what we lack is any sort of joined up approach and the organisations that do exist don't seem to know about others or who to refer you to, let alone fascilitate a referal. It seems they all prefer to sit and talk about the right way of refering to us at the expense of actually doing anything useful. To be honest I think the services that I've encountered are a waste of public money, I think the money could be better spent elsewhere and in a time of straightened public finances this makes it seem worse than ever.