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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Spectrum10k project

23 replies

Threearm · 27/08/2021 17:53

AIBU to not understand the backlash to the project?

I have a fairly severely autistic DC who hasn't got the capacity to communicate her views. I would give anything to make her life easier, that doesn't mean I want to eradicate the autism, I just want to make her life easier.

The voice of the autistic community who can share their views appear to want to speak for the entire community, whilst ignoring those who aren't able to communicate their own views.

I would love research to find more ways of making lives easier :(

OP posts:

Caroloke · 27/08/2021 17:55

I think you've hit the nail on the head really, some want to speak to the entire community.

Caroloke · 27/08/2021 17:55

For*

NoIDontWatchLoveIsland · 27/08/2021 17:57

Yanbu OP.

Disability often causes so much hardship in people's lives, why wouldnt we want to better understand and explore avenues which might lead to better therapies and treatment and improve people's quality of life.

Cabinfever10 · 27/08/2021 17:59

I haven't heard about this have asd as does my ds am off to read up on it just now

CorrBlimeyGG · 27/08/2021 18:00

Everyone has the choice as to whether to take part or not. I won't be, I find the collection of DNA very concerning and am not satisfied with the explanations.

In what way do you think the research might find ways to make life easier?

Cabinfever10 · 27/08/2021 18:23

Having had a quick look into this I think that it could have a great many benefits for those of us with asd. Could you imagine being able to get a diagnosis with nothing more than a quick blood test, no waiting lists asd kids being able to the right support from the start instead of being fobbed off.
Being able to get accurate data on women and girls with asd instead of all the missed diagnosis of women and girls due to using male centered diagnostic criteria

CorrBlimeyGG · 27/08/2021 18:33

@Cabinfever10 That sounds wonderful, but none of it will come from this research. There's no new funding for additional support (or any at all), and there won't be under this government. If you think a blood test would be able to diagnose ASD, are you happy for it to be used in pregnancy to screen it out too? That means people like you, me, your son, potentially being aborted.

The official documentation is disingenuous in that it only tells you half the story. Think about what it doesn't explicitly say, as well as what it does say. There are not enough safeguards in place to ensure that the data would not be used in a way that might well go against your values.

AlfonsoTheMango · 27/08/2021 18:38

@Threearm

AIBU to not understand the backlash to the project?

The voice of the autistic community who can share their views appear to want to speak for the entire community, whilst ignoring those who aren't able to communicate their own views.

I would love research to find more ways of making lives easier :(

I'm autistic and looked at the Spectrum 10K project.

The project has nothing to do with improving our lives. The purpose of the project is research, specifically "to better understand autism, other co-occurring conditions, and wellbeing". The project will (with permission) share anonymised data with pharmaceutical companies so that they can develop new products to treat epilepsy, gut problems, depression etc.

"There are no direct benefits of taking part. The research may lead to improved quality of care for autistic individuals and their families." (But how or when is not set out.)

AlfonsoTheMango · 27/08/2021 18:41

And you can sign up on behalf of your child if you want: "You are aged 16+ and are the biological parent of an autistic child below the age of 16 who is participating in Spectrum 10K".

Here is the sign up page: spectrum10k.org/

NeverDropYourMoonCup · 27/08/2021 18:50

@Cabinfever10

Having had a quick look into this I think that it could have a great many benefits for those of us with asd. Could you imagine being able to get a diagnosis with nothing more than a quick blood test, no waiting lists asd kids being able to the right support from the start instead of being fobbed off. Being able to get accurate data on women and girls with asd instead of all the missed diagnosis of women and girls due to using male centered diagnostic criteria

Yeah, just imagine how that can't possibly go wrong. Maybe my mother could have had prenatal testing and make sure she wasn't encumbered by pathetic wastes of space like me and one of my brothers (one of the mildest comments she made regarding us). Whilst ensuring she kept the 'normal' ones. No need to hiss at me 'if it had been available at the time and I'd known what you were going to be like, I'd have aborted the pair of you and thrown a party to celebrate'. Wonderful.

Original poster

Threearm · 27/08/2021 18:52

I would love them to find a way of diagnosing through a blood test or scan that cuts years off the wait. My DD is severely Autistic but it still took 3.5 years from referral because we had to rule out x, y and z. Technically support is needs based but in reality it doesn't materialise until diagnosis. We got stuck because professionals weren't sure how to respond to her without the diagnosis.

OP posts:

2reefsin30knots · 27/08/2021 18:52

Given the current state of quality of life outcomes for autistic people I think research is desperately needed to understand people's experiences.

I think DNA collection is an important part of the picture, but I do hope whoever is vetting the ethics for the project is really on their game.

Cabinfever10 · 27/08/2021 19:06

@CorrBlimeyGG I don't expect 1 study to achieve everything I said it could lead to but it is a start.
Would I like a gene test during pregnancy to tell people if their baby has asd no however that is not something that would necessarily happen, there has been a genetic test for deafness for years that can be used from very early stages of pregnancy yet is only offered with IVF so why assume that a test for asd would be any different?
Also if we can get accurate data on numbers of autistic people we are in a better position to campaign for the support and funding for the schools, staff and training needed.
All of this will take time and anyone suggesting that we would see real world results in this parliament is deluded as even if they identify a ASD gene there would need to do multiple further studies to confirm their findings.
As for pharmaceutical companies using the data to find better treatments for asd comorbidates why is this a bad thing?

2reefsin30knots · 27/08/2021 19:19

I think a genetic test would be a welcome relief for the many families who know their child finds school incredibly difficult, but because the child masks the school say the child is 'fine' and do nothing to help.

hiplip · 27/08/2021 19:36

Yay, prenatal screening. Let's ensure no neurotypicals ever suffer having to look after one of these ever again

Would I rather have been aborted? Probably, seeing as my life is so utterly shit due to neurotypicals abusing me. I'm sure they'll get their own way sooner or later.

Caroloke · 27/08/2021 20:30

@2reefsin30knots

Given the current state of quality of life outcomes for autistic people I think research is desperately needed to understand people's experiences.

I think DNA collection is an important part of the picture, but I do hope whoever is vetting the ethics for the project is really on their game.

All studies are bound by very strong ethics guidance that has to be adhered to, there are tonnes of checks and balances in place- this includes if the data is shared. Too many Internet scientists who will stop any progress due to their paranoia. I suspect most against it aren't those who would benefit the most anyway.

Original poster

Threearm · 27/08/2021 22:40

A prenatal screen would never have given me even a thought to deciding not to have my DC but I would have cherished having the opportunity to prepare and to be on it for her from the day she was born. She is first centile for her speech and had 3 sessions of salt in 2 years. It is not about changing the child but ensuring the support is there and knowing as early as possible would be a huge help.

OP posts:

PicaK · 27/08/2021 22:46

The people involved in this project refer to autism as a disease. They're linked to the hideous Autism Speaks group. And the inference is to start screening in pregnancy.
I'm not touching this project.

Voice0fReason · 27/08/2021 23:00

As part of the signing up process, you have to consent to allow your data to be shared with various unspecified organisations.

There is nothing in this research that will make lives easier for autistic people.

Diagnosis through a blood test is a pipe dream. It's way too complex for that. Genetics are very complex. Genes mutate all the time. Autism won't just be a simple mutation on one specified gene, it will be different mutations on different genes so it will not be a helpful diagnostic tool. Blood tests might be done AFTER clinical diagnosis in order to add to the research. There are other genetic conditions where the genes have been identified but a blood test is never used for diagnosis, it's still done by clinical observation. Maybe one day we'll get there but we're a very long way off at the moment.

And if you think it's frustrating as a parent, that it takes a long time for diagnosis, imagine how it would feel for a blood test to come back as inconclusive when your child clearly does need a diagnosis.

I'm not against this kind of research, I actually support it generally. I don't think it's as sinister as some people fear. Knowing how rubbish it will be as a diagnostic tool, I really don't worry about it being used for eugenics.
However, I do think it's important that people go into it with their eyes open and understand that this is a very long-term project that won't benefit anyone for a very long time, if ever.

Fishbank · 27/08/2021 23:08

For data to be shared it, even if you agree to it when you sign up, it still have to go through several strings of ethical approval. The terms cover possible eventualities so they don't have to repeat sourcing the data over and over again if the data needs to be shared to progress. Its the same in all research like this, looking at the group of professionals working on this I don't think they'd risk their reputations by bypassing those policies. It also doesn't seem the research is overly about diagnosing is? But the correlation or effects on environment as well as genetics (if any), which when better understood can provide better support for people. It actually seems that the environmental aspect is the new angle, albeit its tricky to navigate as obviously it can be hard to talk about it.

Covidworries · 27/08/2021 23:16

As already mentioned.
To sign up there is a question askingnfor blood to be used for research.
Then the next question ask if willing for blood /DNA to be shared with 3rd parties at anytime in the future. If you say no then they wont accept you for study.
These type of questions happen f
In a variety on things but its not really unboased if one answer isnt possible.

Personally i would stay well clear of this research.

Fishbank · 27/08/2021 23:18

As explained, that's standard, but doesn't mean they just hand it around to whoever without any controls. Its a shame that lots of people will be put off from participating from reading through a load of assumptions on twitter and theories.

AlfonsoTheMango · 28/08/2021 09:25

The Spectrum10K project is the medical model of disability and will be sharing DNA results with "commercial partners" to develop new drugs to deal with epilepsy, "gut problems" and depression.

It has nothing at all to do with preparing parents for the realities of dealing with an autistic child or making the lives of autistic people better, unless it is through selling them drugs.

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