Published on 12, July, 2020
Suppose you have the funding and technical skills to carry out autism research (e.g., questionnaires, qualitative interviews, MRI, EEG, behavioural experiments, virtual reality, etc). What kind of research question would you like to ask? What autism question do you think is still not well known, and what would be your solution to solving it, or extend current knowledge?
I'd be interested in the genetics of autism and following it through family trees.
Especially when autistic people are less likely to be in relationships so less likely to pass their genes on.
Is it just the high-functioning auties passing on the baton?
The last big announcement of genetic research found there are many different unrelated genes and their interactions and genes that cause mutations that can or cannot result in some genes to cause or not to cause autism and basically they found dozens more questions and haven't answered any of the one's they asked.. basically it's so complex even scientists aren't sure what to make of their findings . I obviously don't understand a thing
There is a lot of genetical research going on and autistic activists and autistic scientists argue that it is disproportionate and potentially unethical. What would be the practical application of genetic research? What would be the effect on human diversity and general pull of talents and abilities if autism was genetically cleaned out?
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.
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.
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.
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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.
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?" :(
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.
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.
Not their job to consider it - they only care about risk & profit.
Yes, it is fraught with difficulties. I already have an unrelated genetic condition and any life insurance I were to take out would involve paying a premium of at least triple the usual rate. I'm not sure I'd be able to take out another mortgage either, knowing what I now know. Or pass the medical for a new job.
I feel differently about autism (it's not a progressive disease like my other condition and I see it more as relating to my identity) but when it comes to the open market of insurance my feelings are neither here nor there. That means I'd have to believe my information was held securely and for my own purposes only. Very hard to guarantee this so i would definitely have concerns.
Noneltheless, since we're now diagnosed anyway, I guess we'd have to declare it to avoid invalidating any policies. i suppose I'd also have to tell a potential employer (although i'm now convinced that if I ever work again it will be on a self-employed basis, very probably because of issues relating to autism).
It's certainly a vexed area but I still wish i'd known sooner. If an NHS blood test could have identified this, i'd have gone for it. My need to know would be too great.
Who on earth do they think advanced science and technology? To some degree they would be shooting themselves in the head.
I worry about the genetics research into autism as there is the risk that it could open the door to eugenics, also what worries me is alot of the people who are studying this in the states have firm ties with people who want to eradicate autism.
Jenny Butterfly said:Overall I tend to agree that the emphasis on genes can take us into a very unethical direction. I can feel i might upset people on this subject and so often pull back for precisely that reason.
Unfortunately, people are so dumb that they are handing their DNA and relationship information over to 3rd party companies without realising the implications about where this information is ending up - some police forces have admitted getting access to it.
Once insurance compainies start mining the information, you might find you become uninsurable because of your likelyhood of developing an expensve medical problem.
If people don't believe your information is being sold on, then they are naive.
Overall I tend to agree that the emphasis on genes can take us into a very unethical direction. I can feel i might upset people on this subject and so often pull back for precisely that reason.
But that said, if there had been a genetic test I would have been able to identify my autism much earlier and this would have helped me to access support and also gain more awareness and understanding while i was in the workplace and at an earlier stage in my parenting. I might also not now be in the position of seeing my sons flounder in life because they weren't diagnosed either and so likewise didn't receive any support relating to issues arising from autism.
As it stands decades have gone by and so any benefits associated with early identification have been lost. Can we make up for lost ground? I don't know.