what kind of autism research would you do?

My impression is that they often have a one-size-fits-all approach, so that they struggle when presented with someone who clearly doesn't match their usual "customer profile".

I have the feeling that the support worker goes scurrying off to their supervisor after each meeting with me and they both scratch their heads and then carry on regardless, delivering their usual "product".  It's like a safe path from which they're very relucatnt to deviate unfortunately.    

RIP Van Winkle said, 

“However, the behaviour I inadvertently seem to have mirrored in psychiatric settings, perhaps to ‘fit in’ I defininitely learned there! Perhaps that’s for another thread one day. ”

Perhaps indeed.?

 Interesting you say you not only mirrored but also “learned” there.

I too have learnt a great deal over my many years of existing in this planet.

 Most I see I do not wish to follow or indeed mirror to fit in. I cannot and never will betray myself by changing to suit others that seek only to cause pain and suffering to myself and others.

 I keep taking the hurt as I refuse to accept that all other beings are set out to cause harm.

There are loving caring and understanding people everywhere, I know some and they accept me for who I am and I accept them.

 I do not always fully understand any given exchange but accept each and every being in this earth is unique and has free thought.

 I believe certain things can be learnt that are not innate in me, but I can see that speaking words to cause suffering deliberately are not kind.

 I choose not to mirror that.

I have a couple of health conditions that render me uninsurable.  Way too risky.  I have to take all the risk on myself if I'm travelling.

Yes, i've encountered this unfairness with respect to another genetic condition.  Rather than pay over three times the usual premium I've decided to simply put an equivalent amount into savings each month, in the hope that this will help to guard against unforseen eventualities.  Not perfect, i know, but more affordable and makes me feel I'm doing what I can to deal with risks.   

Thanks Qwerty.  Just had a look and at the moment they seem to be only seeking information from carers for autistic adults - a position I'm in but we lack a formal diagnosis due to total non engagement with services.  I'll revisit this site in future though.   

It's a great way to sit & do nothing while being on the case waiting for someone else - any difficult questions can be blamed on the delay by the other team.

I also get the feeling that he's out of his depth - they seem to like low-functioning 'customers' because they are easy to push around and get medicated into oblivion.   People like me are too much hassle - they'd have to work for their money.

My needs are complex - I appear to be functioning very well because people only talk about my medical problems - and I can clearly expain all the issues because I've had the exact same conversation a thousand times - and that's all they are interested in.

If you talk to me about other subjects, my difficulties are really obvious - but they never do that - even if I tell them  - they go straight back to the medical stuff.

.

Ah, as you will have gleaned from my other posts i'm finding it something of a mixed blessing.  I'd rather have a support worker than not but I'm so far not convinced they're geared up to offer very much.  

You have to wait until you've been seen by the memory team before you get more sessions with the support worker?  I keep running into stuff like this and it does feel very much like being fobbed off.  Why can't they work concurrently?     

You're lucky to have a support worker - I ended up reaching crisis point and eventually I was assessed and was assigned a support worker - who basically hasn't bothered.  

My brain injury means he's decided to fob me off onto the memory team that deals with dementia patients - so I probably won't see him a gain for a couple of years when the other team finally get their act together.

It realy does look as though they don't know what to do so they just hide from their responsibilities.

I have mixed feeling about this.  I've only been diagnosed for a few months but it seems that many in may family don't want to hear about it and certainly don't want to be assessed themselves.  

And yes, people do have the right to make their own choices but even here I can see a downside.  My own take would be that that's their choice but that sometimes the effects of this on both themselves and other family members are far from fine.  My experience has been that when individuals are running into severe difficulties linked to undiagnosed autism and choose to carry on regardless, the impact of this choice radiates out and impinges on the rest of the household.  Good practice, the law and indeed our better nature force us to respect an adult's autonomy, but sometimes this becomes ridiculously difficult.

It's a minefield, yes, but insurers ask about family history anyway so however a person was diagnosed it'd be on the record.  

From my own experience external support is scant but, if I'd known earlier you can bet I'd have been in this forum a lot sooner plus started reading up and taking account of possible needs and issues at a much earlier stage.  I think I'd have been much better equipped both as an individual and as a parent.  

I think I'd still have taken the test.  

Yesterday, at my 1:1 "support" my support worker was once again providing anecdotes and examples from his own family, basically telling me about all the support and adaptations he'd been able to get for his children because their autism was identified early.  "Great!" I thought, "But what about situations that have gone horribly wrong due to not knowing and not getting that early help?"  :(

By the way, have you seen this? https://research.ncl.ac.uk/adultautismspectrum/

Newcastle University has an Adult Autism Spectrum Cohort to try to understand adults with autism and those that were diagnosed late in life. 

If I were doing research into the genetics of autism, I think my main interest would be for the pursuit and advancement in scientific knowledge. I also think it will help with early diagnosis and identification. I've struggled a lot because of a late diagnosis, and if a genetic tests were available, I might have been able to access support sooner. 

I don't think it will likely be studied with eugenics in mind, as it's a relatively rare condition, compared to others where the diagnostic rate is higher. It would be more appealing to get rid of asthma, dementia, allergies, depression than autism - if anyone is doing eugenics. 

The thing about insurance companies is really unfair. People don't chose what conditions they are born with, but charing people with a higher rate because of an innate condition is really unfair. I really do not hope that the advancement of genetic knowledge will be used in insurance companies to discriminate people.

Yeah, that's true. People willing to participate in research studies might be a different population compared to those who won't show up in research.

I can relate to you about what you say about the family stuff. I think some of the people in my family view a diagnosis as a negative thing. 

Also, there are some people who prefer to remain undiagnosed (which is fine and is their choice).

So many factors will make it difficult to test every kind of autistic person. 

Yeah, I guess it'll be difficult, unless a nationwide screening for autism is carried out periodically for future generations, otherwise, even with increasing awareness there could still be people who are overlooked. The safest way to do the research might be to ask family members of people who have a diagnosis to come into the lab and have an assessment, but I guess that will be quite hard. Maybe a large-scale study on "autistic traits" might be more doable than "autism diagnosis" itself? Questionnaires like the AQ could be sent out to millions of people to complete, and we could see if families consistently score high or low together. 

I don't really believe in the MMR stuff either. The original paper on vaccines was retracted and had many problems in their research. There has now been so many papers (with very large sample sizes) showing that vaccines do not cause autism. 

I think more likely environmental factors could be like complicated births as well as drug and alcohol use during pregnancy (since these complications affecting the brain in infancy can cause a lot of developmental problems). Another environmental factor could be social, like being deprived of of social interaction during childhood, e.g., a study done on Romanian orphans showed that they had autism-like symptoms: https://www.spectrumnews.org/opinion/viewpoint/romanian-orphans-reveal-clues-origins-autism/

I guess it will be hard to tell what are exactly the factors, but it's easy to believe that both might be involved. It's really nice to hear that she is not experiencing any learning problems! That's really good. It's often the case they birth traumas can cause developmental problems like cerebral palsy. It's possible that both genetic and environmental factors could be at play (since you mentioned that there are several autistic people in the family), but the most important thing is that she is healthy and happy.

I guess it's harder to do it retrospectively, as they will need to interview lots of people to collect the information, and it will be based on memories of mothers from 40 years ago. So I guess people who are starting in the field would prefer to the research by starting from recording data in hospitals where it takes place. I remember hearing something about preterm and birth trauma studies being planned for the new Cambridge children's hospital: https://www.cam.ac.uk/research/news/cambridge-receives-ps100-million-for-major-new-childrens-hospital It's been a while back since I heard about it, so my memory is a bit fuzzy, but I think they will try to record lots of data and look at both physical and mental health in relation to lots of factors.

Yes, I really like this research, and the way it tested the double empathy model. The finding that AS/AS empathise with one another equally well compared to NT/NT is a very important one as it enhances our knowledge of these interactions, and how empathy works among AS and NT people. 

The statement from Damian Milton is interesting. If AS/AS communicates as well as AS/NT, then the social deficit that arises from AS/NT is really mind blindness on both sides, instead of from AS. It's an interesting idea. I guess that explains why people on these forums can often find so much in common and sympathise with each other.

I think it's amazing that you are keeping up with a lot of recent literature on social aspects of autism. And many thanks for sharing these. The research is definitely interesting. I also read spectrumnews sometimes as well when I'm not busy. A lot of the articles are quite insightful

People are too busy showing off on FB and completing their family tree by handing off every detail of their lives online - so all relationships and links are known - and now they're giving away their DNA - they are so naive.   

In that case any insurer or employer might ask for a blood test... and will. All your life will be affected without any control.

It is also not certain that you'll get any support, do you get anything useful now? It is in societal attitudes mostly, isn't it?

I think genetics is a huge pandora's box and society hasn't caught up yet with implications and safeguards.

Like the recent scare about disclosing to DVLA, the only control now is in keeping it off records.