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carlos55
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21 Nov 2021, 3:43 pm

KenG wrote:
Nades wrote:
They're only a small fringe group with to much time on their hands.

There is a saying we all heard if. "The devil makes work for idle hands". In the case of autistics it's more "unhealthy obsessions and poor judgment makes work idle autistics"
I'm not sure if they have have too much time on their hands, because some of them seem quite busy.
For example:
Dr Monique Botha is a postdoctoral research fellow at the University of Stirling, whose research revolves around minority stress, mental health, and community connectedness in the autistic community.
Dr Chloe Farahar is an associate lecturer at University of Kent, and co-founder and educator at Aucademy, a project for Autistic learning and the education of non-autistic people about Autistic experience.
Holly Smale is the author of the best-selling book series "Geek Girl" (about an undiagnosed autistic teenager).


None of these are real hard science qualifications, from the looks of it - 2nd or 3rd tier made up subjects, research revolves community connectedness in the autistic community (what the hell is that)? Not quite micro biology or neuroscience, is it? the kind of qualifications that makes the uni lots of money charging for, but sadly students end up flipping burgers with a life time of debt.

The other two have unspecified background qualifications, one wrote a book of unknown quality.

They are just autistic people expressing their own opinion which they are welcome to, just as long as they don’t expect us to go along with it.

These types of people remind me of a corrupted elite that have drifted so far from the people they are supposed to represent, their claim to represent us is not fit for purpose.


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23 Nov 2021, 2:10 pm

Sweetleaf wrote:
How many of these protestors could raise a child let alone an autistic child or one with downs syndrome?
One of the main protesters, Emma Dalmayne, is an autistic mother who is raising 5 autistic children:
https://www.learnfromautistics.com/voic ... -advocacy/


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23 Nov 2021, 2:58 pm

KenG wrote:
Sweetleaf wrote:
How many of these protestors could raise a child let alone an autistic child or one with downs syndrome?
One of the main protesters, Emma Dalmayne, is an autistic mother who is raising 5 autistic children:
https://www.learnfromautistics.com/voic ... -advocacy/


She`s diagnosed late in life, like melanie sykes or christine mcguinness so its likely her symptoms are typically mild & almost invisible.

Most of her blog is just a rejection of scientific fact and explains autism from her personal experience

She probably has little in common with those disabled by their autism. So she speaks from a position of privilege.

She has this quote on her website about NT privilege, i suggest she look at her own:

Quote:
Neurotypical Privilege
Neurotypical privilege refers to the ease with which neurotypicals navigate life because their society has developed accommodations that cater to most of their needs. It is difficult for many neurotypical individuals to truly understand the privileges they enjoy. Neurotypical privilege impacts the ease of daily living and long-term opportunities. Square 8 is a blog devoted to disability that has a detailed post about neurotypical privilege with several specific examples.


10k is voluntary no one was turning up at their door demanding their dna, if they dont like it they didnt have to participate.


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29 Nov 2021, 7:34 am

carlos55 wrote:
Who gave them authority to speak for 150 million people?
Nobody did.
A few thousands of autistics who oppose cure have gathered worldwide and started the Autistic Community.

Autistics who support cure are only a small minority, but they do have their own movement, called "Autistic Dark Web".


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carlos55
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29 Nov 2021, 8:00 am

KenG wrote:
carlos55 wrote:
Who gave them authority to speak for 150 million people?
Nobody did.
A few thousands of autistics who oppose cure have gathered worldwide and started the Autistic Community.

Autistics who support cure are only a small minority, but they do have their own movement, called "Autistic Dark Web".


Autistic dark web was created by just a small minority of people and is long gone as far as I’m aware.

Many people wanting a cure are either too disabled to be part of any movement or just go along with the official status quo.

So saying majority / minority is just trying to prove a negative ie someone’s silence is proof that they agree

But that’s irrelevant anyway, if someone doesn’t want to be cured don’t take the cure or treatment if one is invented.

But they have no moral right to dictate to others who choose a different path.


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Nades
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01 Dec 2021, 3:06 am

carlos55 wrote:
KenG wrote:
carlos55 wrote:
Who gave them authority to speak for 150 million people?
Nobody did.
A few thousands of autistics who oppose cure have gathered worldwide and started the Autistic Community.

Autistics who support cure are only a small minority, but they do have their own movement, called "Autistic Dark Web".


Autistic dark web was created by just a small minority of people and is long gone as far as I’m aware.

Many people wanting a cure are either too disabled to be part of any movement or just go along with the official status quo.

So saying majority / minority is just trying to prove a negative ie someone’s silence is proof that they agree

But that’s irrelevant anyway, if someone doesn’t want to be cured don’t take the cure or treatment if one is invented.

But they have no moral right to dictate to others who choose a different path.


Very true. Campaigning by a small group is one thing but when it results in a halt to research then it goes beyond simple disagreements.



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01 Dec 2021, 6:12 am

Nades wrote:
The protestors seem like fools. They object to research being done into how autism develops?

There's some larger scientific and historical context you and others in this thread seem to be missing.

First, Spectrum 10K is not the first project of its kind. Far from it. There already exist other large collections of autistic people's genes, at least one of which is even bigger than Spectrum 10K's target size of 10K. The biggest and best-known one is SPARK, whose target size is 50K, and which already has "29,345 families enrolled," as of today.

So the question here is not whether this kind of research should be done at all. It is already being done. The autism research establishment has already been focused heavily on genetics for decades. Huge sums of money have already been spent on this.

Instead, the question here is: Do we need yet another large-ish collection of autistic people's genes? Or could the money being spent on Spectrum 10K be more productively spent on other kinds of research?


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Last edited by Mona Pereth on 01 Dec 2021, 8:23 am, edited 4 times in total.

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01 Dec 2021, 8:09 am

Nades wrote:
Why spend money on dealing with coping strategies when the disorder can be understood and hopefully erased entirely in the future?

Autism is not a single "disorder." It is a general category of at least hundreds, maybe thousands, of different conditions, with certain general kinds of traits in common.

There are at least hundreds, maybe thousands, of different genetic variations that correlate with autism. Only a small minority of the different kinds of autism are a result of easily-identifiable genetic syndromes caused by single specific genetic mutations.

So, don't hold your breath waiting for a total, radical "cure."

Perhaps there might be other kinds of research that could result in things (other than a total "cure") that would be helpful to you within your lifetime?


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Last edited by Mona Pereth on 01 Dec 2021, 8:29 am, edited 3 times in total.

Nades
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01 Dec 2021, 8:27 am

Mona Pereth wrote:
Nades wrote:
Why spend money on dealing with coping strategies when the disorder can be understood and hopefully erased entirely in the future?

Autism is not a single "disorder." It is a general category of at least hundreds, maybe thousands, of different conditions, with certain general kinds of traits in common.

There are at least hundreds, maybe thousands, of different genetic variations that correlate with autism. Only a small minority of the different kinds of autism are a result of easily-identifiable genetic syndromes caused by single specific genetic mutations.

So, don't hold your breath waiting for a total, radical "cure."


The more genetic research the better. Even not being able to find a genetic cause might focus attention to environmental or something. I strongly suspect socially awkward parents having kids have a bigger impact that people realise.



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01 Dec 2021, 8:30 am

Mona Pereth wrote:
Nades wrote:
The protestors seem like fools. They object to research being done into how autism develops?

There's some larger scientific and historical context you and others in this thread seem to be missing.

First, Spectrum 10K is not the first project of its kind. Far from it. There already exist other large collections of autistic people's genes, at least one of which is even bigger than Spectrum 10K's target size of 10K. The biggest and best-known one is SPARK, whose target size is 50K, and which already has "29,345 families enrolled," as of today.

So the question here is not whether this kind of research should be done at all. It is already being done. The autism research establishment has already been focused heavily on genetics for decades. Huge sums of money have already been spent on this.

Instead, the question here is: Do we need yet another large-ish collection of autistic people's genes? Or could the money being spent on Spectrum 10K be more productively spent on other kinds of research?


There is no real limit to the genetic research that can be done I think. Focusing on managing the disorder has reached the apex of what can be done now.

Another problem is how focused any research into autism accomodation seems to be skewed to kids. I would prefer an excessive time spent on genetics over time spent on finding accomodations.



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01 Dec 2021, 9:33 am

Nades wrote:
KenG wrote:
Who’s on the panel?
Dr Monique Botha, Dr Chloe Farahar of Aucademy, Kieran Rose – The Autistic Advocate, Priscilla Eyles, Holly Smale, Tanya Adkin, Autistic Science Person, Emergent Divergent (David Gray-Hammond), Liz Soper


[...] They're only a small fringe group with to much time on their hands.

Actually, most of them are busy grad students.

Some of them are up-and-coming autism research scientists who have their own ideas on what kinds of research would be most beneficial. For a news story about some of them, see Meet the autistic scientists redefining autism research by Rachel Nuwer, Spectrum News, 10 June 2020.


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01 Dec 2021, 3:43 pm

Mona Pereth wrote:
Nades wrote:
Why spend money on dealing with coping strategies when the disorder can be understood and hopefully erased entirely in the future?

Autism is not a single "disorder." It is a general category of at least hundreds, maybe thousands, of different conditions, with certain general kinds of traits in common.

There are at least hundreds, maybe thousands, of different genetic variations that correlate with autism. Only a small minority of the different kinds of autism are a result of easily-identifiable genetic syndromes caused by single specific genetic mutations.

So, don't hold your breath waiting for a total, radical "cure."

Perhaps there might be other kinds of research that could result in things (other than a total "cure") that would be helpful to you within your lifetime?


Whilst I agree with you about multiple autism(s), thousands are an over estimate, there is no more proof of this than there is proof that there are several different forms of autism. No number is proved.

Your view of the future of autism therapies is rather overly pessimistic, they are starting to introduce gene therapy into the autism space at the moment as this article suggests. It’s still in its infancy but will become a reality in the not-too-distant future for single monogenic issues, no doubt polygenic will follow later.

Even if such things are not a complete cure, it could radically change the prognosis, career expectations and life expectancy of many autistic people, for others research can uncover other causes of autism such as cerebral folate antibodies, that with treatment can radically change prognosis even in effected adults.

It seems most are simply motivated by the cult of identity politics, although fortunately their numbers are small. There are 700,000 autistic people living in the UK, the number that turned up to this demo could comfortably fit into a small golf club café which I believe they did.

SBC is partly to blame for entertaining many of the ideas of the neurodiversity movement probably influenced by his back ground in psychology playing good cop / bad cop with autistic people and attempting to make retirement money via a book in the process.

He follows many who thought they could influence the direction of something and get a particular group on side and failing in the process, he probably underestimated the cult of identity politics.

His replacement I suspect probably won’t make the same mistake, so in the long term may actually harm the ND movement that may be seen as problematic to be marginalised rather than to be listened to.

https://www.science.org/content/article ... rms-autism
https://www.mdpi.com/2073-4425/12/11/1667/htm


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01 Dec 2021, 9:01 pm

carlos55 wrote:
Mona Pereth wrote:
Autism is not a single "disorder." It is a general category of at least hundreds, maybe thousands, of different conditions, with certain general kinds of traits in common.

There are at least hundreds, maybe thousands, of different genetic variations that correlate with autism. Only a small minority of the different kinds of autism are a result of easily-identifiable genetic syndromes caused by single specific genetic mutations.

So, don't hold your breath waiting for a total, radical "cure."

Perhaps there might be other kinds of research that could result in things (other than a total "cure") that would be helpful to you within your lifetime?


Whilst I agree with you about multiple autism(s), thousands are an over estimate, there is no more proof of this than there is proof that there are several different forms of autism. No number is proved.

I said, "at least hundreds, maybe thousands." In the past, here on Wrong Planet, I've posted links to numerous scientific articles saying this. A little Googling just now has turned up the following:

Quote:
In the past decade, hundreds of genes have been identified that contribute to the serious deficits in communication, social cognition, and behavior that patients often experience. However, these only account for 10–20% of ASD cases.

- from Genetic Causes and Modifiers of Autism Spectrum Disorder by Lauren Rylaarsdam and Alicia Guemez-Gamboa, Front. Cell. Neurosci., 20 August 2019.

carlos55 wrote:
Your view of the future of autism therapies is rather overly pessimistic, they are starting to introduce gene therapy into the autism space at the moment as this article suggests. It’s still in its infancy but will become a reality in the not-too-distant future for single monogenic issues, no doubt polygenic will follow later.

Polygenic will be much harder. Even the genetics-based treatments for monogenic conditions aren't expected to do much unless applied either to newborns or in the womb.

On the bright side, the monogenic conditions tend to be among the most severely disabling kinds of autism. If a treatment can help someone acquire language-based communication or mitigate severe intellectual disability, that's all to the good IMO.

But what I have big ethical issues with is the idea of medical treatments aimed at enabling people to conform to arbitrary social norms. It would be much better, IMO, to get those arbitrary social norms loosened up and replaced with a new norm of asserting, accepting, and accommodating a wide variety of individual people's needs. This would benefit lots of people, not just autistic people.

For example, about 15 to 20 percent of people in general -- not just autistic people -- have sensory sensitivities. It would be good for all these people to live in a world where sensory sensitivities were better understood, accepted, and accommodated.

One kind of medical research we do need a lot more of, IMO, is research into the unusual ways that many autistic people respond to various medicines, affecting our ability to get treated effectively for whatever other conditions we may have. As far as I am aware, this issue hasn't been researched very much at all, beyond acknowledgement that it exists.

carlos55 wrote:
It seems most are simply motivated by the cult of identity politics,

What you call "the cult of identity politics" I call a belief in the possibility of meaningful social change that can benefit various marginalized groups (and other people too).

Autistic rights activists tend to be disproportionately LGBTQ+, and thus tend to be disproportionately people who have witnessed, within our own lifetimes, dramatic social changes that have improved the lives of LGBTQ+ people. (I'm bisexual and gender-nonconforming). We also tend to be people with at least some awareness of the larger disability rights movement and the huge progress it too has made over the past 50 years or so (though it still has a long way to go).

EDIT: On another subject:

Your sig line quotes George Bernard Shaw: "The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

I'm curious as to what that quote means to you, given your hatred of the ND movement. After all, that quote (replacing the old-fashioned language of "man" with "people" and "himself" with "themselves") is actually a pretty good summary of what the ND movement stands for. We seek to "adapt the world" to the needs of people whose needs are all too often dismissed as "unreasonable." And we believe that this will result in great progress for society in general, not just for ourselves.

You, on the other hand, seem to me to be pining endlessly for a radical adaptation of yourself to the world.


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Last edited by Mona Pereth on 02 Dec 2021, 1:50 am, edited 2 times in total.

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02 Dec 2021, 1:30 am

Nades wrote:
This is what happens when autistics allow autism to become their entire identity

Autism is not their "entire identity," although it's an important part of their identity. (See also my reply to you here.)

Nades wrote:
and who they are instead of letting something more constructive and beneficial become a focal point of their lives.

I consider it to be very "contructive and beneficial" to press for a world in which people's individual needs are better understood, accepted, and accommodated. I have felt this way for my entire life, long before I finally realized that "autism" was a handy label for many of the things that make me an oddball, for which I previously had no label. I wish I'd realized this earlier.

(I began suspecting I might be on the autism spectrum back in late 2008, when I met the man who eventually became my business partner and then my boyfriend. Also at around that same time, my niece was diagnosed with autism, which added to my suspicion that I might be autistic too. But I didn't fully grasp its significance or start seeking out other autistic people until early 2018. I finally got diagnosed in spring 2019.)

A big part of my life strategy, prior to then, has always been to seek out (or sometimes to start) groups of fellow oddballs, of one kind or another, and to find ways to minimize pressures to conform to arbitrary mainstream social norms.

Nades wrote:
An autistic with a skewed sense of self worth feels mundane research like this is a threat to them because they let autism become them. An autistic with a proper cause in their life wouldn't give a monkey poop about research like this.

What sort of thing do you consider to be a "proper cause"?


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carlos55
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02 Dec 2021, 3:51 am

Mona Pereth wrote:
carlos55 wrote:
Mona Pereth wrote:
Autism is not a single "disorder." It is a general category of at least hundreds, maybe thousands, of different conditions, with certain general kinds of traits in common.

There are at least hundreds, maybe thousands, of different genetic variations that correlate with autism. Only a small minority of the different kinds of autism are a result of easily-identifiable genetic syndromes caused by single specific genetic mutations.

So, don't hold your breath waiting for a total, radical "cure."

Perhaps there might be other kinds of research that could result in things (other than a total "cure") that would be helpful to you within your lifetime?


Whilst I agree with you about multiple autism(s), thousands are an over estimate, there is no more proof of this than there is proof that there are several different forms of autism. No number is proved.

I said, "at least hundreds, maybe thousands." In the past, here on Wrong Planet, I've posted links to numerous scientific articles saying this. A little Googling just now has turned up the following:

Quote:
In the past decade, hundreds of genes have been identified that contribute to the serious deficits in communication, social cognition, and behavior that patients often experience. However, these only account for 10–20% of ASD cases.

- from Genetic Causes and Modifiers of Autism Spectrum Disorder by Lauren Rylaarsdam and Alicia Guemez-Gamboa, Front. Cell. Neurosci., 20 August 2019.

carlos55 wrote:
Your view of the future of autism therapies is rather overly pessimistic, they are starting to introduce gene therapy into the autism space at the moment as this article suggests. It’s still in its infancy but will become a reality in the not-too-distant future for single monogenic issues, no doubt polygenic will follow later.

Polygenic will be much harder. Even the genetics-based treatments for monogenic conditions aren't expected to do much unless applied either to newborns or in the womb.

On the bright side, the monogenic conditions tend to be among the most severely disabling kinds of autism. If a treatment can help someone acquire language-based communication or mitigate severe intellectual disability, that's all to the good IMO.

But what I have big ethical issues with is the idea of medical treatments aimed at enabling people to conform to arbitrary social norms. It would be much better, IMO, to get those arbitrary social norms loosened up and replaced with a new norm of asserting, accepting, and accommodating a wide variety of individual people's needs. This would benefit lots of people, not just autistic people.

For example, about 15 to 20 percent of people in general -- not just autistic people -- have sensory sensitivities. It would be good for all these people to live in a world where sensory sensitivities were better understood, accepted, and accommodated.

One kind of medical research we do need a lot more of, IMO, is research into the unusual ways that many autistic people respond to various medicines, affecting our ability to get treated effectively for whatever other conditions we may have. As far as I am aware, this issue hasn't been researched very much at all, beyond acknowledgement that it exists.

carlos55 wrote:
It seems most are simply motivated by the cult of identity politics,

What you call "the cult of identity politics" I call a belief in the possibility of meaningful social change that can benefit various marginalized groups (and other people too).

Autistic rights activists tend to be disproportionately LGBTQ+, and thus tend to be disproportionately people who have witnessed, within our own lifetimes, dramatic social changes that have improved the lives of LGBTQ+ people. (I'm bisexual and gender-nonconforming). We also tend to be people with at least some awareness of the larger disability rights movement and the huge progress it too has made over the past 50 years or so (though it still has a long way to go).

EDIT: On another subject:

Your sig line quotes George Bernard Shaw: "The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."

I'm curious as to what that quote means to you, given your hatred of the ND movement. After all, that quote (replacing the old-fashioned language of "man" with "people" and "himself" with "themselves") is actually a pretty good summary of what the ND movement stands for. We seek to "adapt the world" to the needs of people whose needs are all too often dismissed as "unreasonable." And we believe that this will result in great progress for society in general, not just for ourselves.

You, on the other hand, seem to me to be pining endlessly for a radical adaptation of yourself to the world.


Certain genes have a greater influence than others SHANK3 for example, similar treatments on one can possibly be used on others, also multiple genes implicated don’t always translate into multiple autisms as some suspect a cumulative effect influenced with just one or more creating a tipping point to disability.

This may be why many people have some autistic traits but not autism itself like many celebs that some casually suspect on this site as being aspies, but are unlikely to reach the score if they were tested.

Apart from genes implicated they haven’t isolated the many autisms yet so nothing is proved one way or the other.

Anyway im not claiming to be an expert on the matter but others who are, they state that genetic treatments are coming to autism (see prev link)

mona wrote:
from Genetic Causes and Modifiers of Autism Spectrum Disorder by Lauren Rylaarsdam and Alicia Guemez-Gamboa, Front. Cell. Neurosci., 20 August 2019


You copy a scientific link confirming the “disorder” of autism in the human genome, I thought ND activists believed autism was a natural normal difference like being left-handed?

mona wrote:
On the bright side, the monogenic conditions tend to be among the most severely disabling kinds of autism. If a treatment can help someone acquire language-based communication or mitigate severe intellectual disability, that's all to the good IMO


It seems you recognise the importance of genetic research which is why studies like this need to be done

mona wrote:
But what I have big ethical issues with is the idea of medical treatments aimed at enabling people to conform to arbitrary social norms


If you mean treating people so everyone has to think the same way - I don’t think anyone wants or cares about that, different thinking styles without the disability is real neurodiversity that should be preserved. I don’t think anyone is aiming to create cloans, just removing the sensory crap, the crack cocaine like addiction of the need to stimm, anxiety, improving executive functioning and intelligence always being the main targets.

mona wrote:
I'm curious as to what that quote means to you


I believe the path to self-respect and human dignity lies with people being independent, self-reliant, aiming for self-improvement both physically & mentally and being better able to cope with the world as it is.

The best way to achieve that is to reduce or remove the imprisoning disabling features of autism biologically.

While there needs to be accommodation’s & opportunity for those that can (I don’t believe anyone is against that) the ND movement with its anti-treatment cure campaign seeks to create what`s commonly known as a dependent client group with its political hierarchy. In other words, keeping people down & disabled to benefit those at the top of the functional tree.

Adults holding out a begging bowl, being reliant on both the state and others including parents for basic needs to function in society, things that could easily be taken away through a change in family circumstances or national crisis.
An old saying I heard -“The world wasn’t built for us, we were built for the world” in other words humans have to adapt for the environment not the other way round.


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Last edited by carlos55 on 02 Dec 2021, 4:50 am, edited 1 time in total.

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02 Dec 2021, 4:06 am

KenG wrote:
Nades wrote:
I don't see an issue with the study they're protesting against.

Here is a video of the protest. It may help you to understand why the autistic campaigners are protesting:


I watched the video. Spectrum 10K is an expansion of other global genetic screening studies (I think this started in the University of Toronto in Canada) to create a genome database of individuals with autism, their immediate family and even their progenitors (e.g. grandparents) and their kids (including children who are NT).

It's purpose ultimately is what Nades has alluded to, which is genetic counselling. People intending to have kids can determine their risk factor of having a child with autism, ADHD or ID.

Ultimately in the future it will create the foundation for prenatal testing and then finally IVF where two parents with high risk can select sperm/eggs that can be screened for genes and implanted in the mother's womb