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Cambridge U to study 10,000 autistics for support needs

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ASPartOfMe
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24 Aug 2021, 6:38 am

Cambridge University to lead UK’s largest autism study

Quote:
Cambridge researchers will on Tuesday launch the UK’s largest ever study into autism, aiming to achieve better levels of support and understanding for autistic people.

The Spectrum 10K project will recruit 10,000 autistic people from across the UK in order to boost understanding of how biological and environmental factors impact on them, organisers say.

The project will be carried out by Cambridge’s world-leading Autism Research Centre (ARC) in conjunction with the nearby genetics research body the Wellcome Sanger Institute and the University of California Los Angeles (UCLA).

Researchers say the study will examine the different needs of people with autism, many of whom have additional conditions including epilepsy, anxiety and depression.

With some 700,000 autistic people in the UK, the study’s organisers say they will attempt to better understand what causes the broad levels of diversity within the autism spectrum, with the aim of identifying what support works best for each individual.

“There is an urgent need to better understand the wellbeing of autistic individuals. Spectrum 10K hopes to answer questions such as why some autistic people have epilepsy or poor mental health outcomes and others do not,” Professor Simon Baron-Cohen, the director of the ARC who is leading the study, said in a statement.

People of all ages, genders, ethnicities and intellectual capacities will take part in the study, in which eligible participants will be asked to complete an online questionnaire and provide a DNA saliva sample by post.

Autistic participants can also invite biological relatives – autistic or otherwise – to participate.


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carlos55
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24 Aug 2021, 7:30 am

I went on their website and was put off by the fact they don’t share individual data with the participants.

So I could have a faulty gene, they would know but they won’t be telling me.

I understand similar studies in the US share the findings with the participants.

Typical underhanded way Simon Baron-Cohen team at Cambridge operate.

Pretend they believe in ND and don’t want to cure autism then collect dna on autistic people to try to prevent it.

They think they can please everyone through their two faced dishonesty.

They’ll have to make up their minds are they serious researchers that want to help autistic people and if they do try being honest with them.


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kraftiekortie
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24 Aug 2021, 7:49 am

I don't believe I have "faulty genes," even though I'm autistic.

I would like to have my "personal data" revealed to me.

Let's hope the results of this study trickles down to "regular" clinicians and regular folks.



cat303
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25 Aug 2021, 3:53 am

It's partially funded by Autism Speaks (read the small print!), they have been very shady about how the samples will be used/stored etc...., one of their 'ambassadors' spent yesterday abusing autistic people on twitter, barely any autistic people were consulted, there is no similar call for NT dna.... I could go on but I'm just going to say that this is an affront to all of us actually autistic researchers who know that you don't need dna to help our wellbeing.



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25 Aug 2021, 5:43 am

It's being heavily criticised on 'Autistic twitter'.



carlos55
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25 Aug 2021, 7:34 am

I don’t hold any conspiracy theories on how it will be used.

The gov can find out my aspie status quite easily without this.

Just don’t like the two faced underhand way they are going about it.

Similar studies in the US share individual data findings with the participants in an open and honest way.

On the website if I want to sign up it’s asking for my DR details so presumably they will get info from him.

But if I have a gene fault that some scientist is researching and suggests possible treatments for I won’t know and presumably neither will my doctor.

Is it any wonder many find it a little sinister.

It’s time Simon Baron-Cohen quit anyway he’s totally discredited by both cure seekers and ND advocates alike.

Like autism speaks he tries to be all things to everyone and unsurprisingly it doesn’t work. All sides end up turning against you.

They have to make up their minds do they want to help autistic people by researching autism in a meaningful way for potential medical treatments or just become a paper pushing UK branch of ASAN.


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firemonkey
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25 Aug 2021, 9:20 am

carlos55 wrote:
Just don’t like the two faced underhand way they are going about it.

Similar studies in the US share individual data findings with the participants in an open and honest way.

On the website if I want to sign up it’s asking for my DR details so presumably they will get info from him.

But if I have a gene fault that some scientist is researching and suggests possible treatments for I won’t know and presumably neither will my doctor.

Is it any wonder many find it a little sinister.



A very good point. I don't buy into the eugenics hysteria, but agree totally that the individual data findings should be shared.

Just looked at FAQ- Genetic data.
Quote:
We understand that some autistic individuals and their family members would like to receive feedback about their DNA. However, we do not currently have the facilities to provide feedback on your genetic data in an ethical manner that minimizes distress with the right support and counselling services.


I've done quite a few surveys. There's never been anything like the above. Surely that should've been sorted before the project was launched?! If they can't get the basics right that's a major red flag.



Fnord
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25 Aug 2021, 9:27 am

It is a "study", which means it is based on statistical analysis of data, and thus prioritizes correlation over causation.

"There are lies, damned lies, and statistics." -- Samuel Clemens (1835-1910), writing as Mark Twain

I do not recommend participation.


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ilovepalmtrees
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25 Aug 2021, 12:33 pm

I'm not autistic but I have OCD and a few years ago I did a study where I filled out a questionnaire about my symptoms and they took my blood to figure out what genes cause OCD. I haven't received any results.