Where Do You Want Autism Funding To Go?

thanks you Rosy mod.

Reminder of Rule 7:

This is a hate-free zone for autistic people, their families and friends, and professionals working in the field. We do not permit sexism, homophobia, racism, anti-Semitism, religious intolerance, transphobia, disability hate speech, hate speech, obscenities or pornography to be posted or linked to here.  

I would see funding go to

•ways for AS peeps to gather and get to know each other, feel validated personally.

•support structures for reasonable accommodation mandated and in place at all learning institutions.

•a data base that pairs super powers, (like a non speaker who can type 125 WPM with a steal-trap memory) can be pooled and opportunities extended.

•work share space designed for AS peeps where they can do some work that fulfills them in an accommodating environment.

•more efforts towards independent living spaces with a state funded support structure for such.

Here's an article that might give you guys a bit of food for thought.

www.longdom.org/.../gabr-genes-autism-spectrum-disorder-and-epilepsy-2165-7890-1000131.pdf

There is no value in acknowledging the way the world is now unless you have a plan to make it better.

You are talking about how the world should be. I agree with you, by the way, but I know that there is no hope to see it happen.

I am talking about how the world is now.

We are just talking about different things.

so your argument in a nut shell is that autism specific funding (which pays for things like sensory rooms and day trips) should be cut and spent instead on basic care needs for disabled people in general (like pip and social care)? Because that's what it sounds like you are saying.

If not lets look at it this way? Isn't a high functioning (as measured by IQ) autistic adult having he opportunity to have a social life as important as a low functioning autistic kid having a sensory room?

Totally agreed 

Lol, that's the usual impasse that I meet when talking with ASD people. They drone and drone about how the world should be. They ignore any argument about how the world effectively is. For the sake of discussion:

I agree that there should be funding allocated for high functioning people and their needs. Too bad that in the real world, the NHS has no money to spend for that. I met parents of severe needs children that were forced to pay for private carers due to the abysmal quality of NHS care. Hoping that NHS would ever allocate funding for somebody like us is wishful thinking. I spent about one year trying to get NHS assistance, every single time I was told: "we have nothing in place for people like you. We can barely provide assistance to people with complex needs." 

Peter said:

we can assume these needs have already been addressed.

Well, they are not.

That argument has several failings.

in particular low functioning people do not roll in their own filth, at least not for very long. Individuals with that level of need are either  cared for by their families or institutionalised. Now there may be some autistic people who struggle with day-to-day functioning who live in dirty houses and eat unhealthy meals, these are the kind of individuals who would qualify for PIP payments. Again this is not autism specific funding, this is general social care funding.

most of those who have these extreme every day care needs will have those needs met out of funding which is for disabled people in general not specifically for autism. When we are talking about how autism specific funding should be spent we can assume these needs have already been addressed.

The kind of things autism specific funding is spent on with regards to low functioning people is things like sensory rooms or carers to facilitate special day trips. That is the kind of funding we are talking about here and discussing how it should be spent.

But gene therapy is being used. Gene therapy is being used on the NHS right now. But as I’ve previously explained these therapies don’t affect the gene pool because they don’t change the genes that someone passes onto their children.

there is no reason to believe that we are going to lose genes with some potential hidden use. if anything we will probably get more of them because the people who would otherwise have gotten ill and died off will have an opportunity to have kids and pass their faulty genes on.

According to Roman Catholics, gene therapy is bad because reasons and you should not question it otherwise God will send you straight to Hell forever. 

Peter, you are overtly optimistic, a common trait in ASD.

Social services are stretched beyond any breaking point. There is barely enough to give some support to people that just cannot survive on their own. If you can live without rolling in your own filth, then NHS has no resources left to help. They can barely keep the low-functioning people alive. People like us have priority zero.

but it is mostly genetic. The majority of scientists agree on that now. Twin studies have demonstrated this quite effectivly. pubmed.ncbi.nlm.nih.gov/.../

If it is not genetic, then it is environmental. We all know that it's not environmental, unless there is something very, very strange in our environment. Maybe the microplastics pollution? That would explain a lot of things.

Gene therapy can increase suffering, and cause ecological disasters. 

Then when you go into genetic studies things get far more complicated and why gene editing is not been used on all disability/disorder/disease etc... especially the ones associated with more than one gene.

The problem I have with gene editing is we don't know the future, what we see as good today could be bad functioning in the future. The sickle cell mutation is a timely example, the sickle cell mutation has been found to starve the parasite that causes the disease. The sickle cell mutation is increasing by each generation especially in areas where malaria is endemic. 

Nature seems to know what it's doing while humans don't, so many epidemics are a result of what humans have done to nature, and genes are part of nature. I trust nature more than humans because of how much we don't know and that as research continues they're going to find errors in the present conclusions. 

yes I have heard these arguments before. but when you factor in depresion and sucide rates into it you need to reasses things. Suporting people to feel like life is worth living is as inportant as suporting people to live. And again autistic people of normal or abouve average inteligence make up the majority of autistic people.

38% below normal inteligence, 40% abouve average inteligence. www.frontiersin.org/.../full

Those words are not synonyms, neurodivergent is an identity. We are not defective!

1. that paper says in it's own introduction most of the papers they have looked at disagree with their interpritation.
2. they talk about 'rare variants of large effect size' but modern consensus is that autism is caused by lots of difrent variant genes working together each of which may not have a big effect on its own.