ASD research...who are they researching?!?

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Ok. So this may come off as some sort of a rant but I promise you, I'm going somewhere. I seriously want to know where and on whom are they doing this reasearch???

There is sooooo much they dont know about ASD, at least here in the U.S. It seems that in the UK they have more access to help. Who are they researching?!?!? Children? Yes, I totally agree with that, so keep doing it, but what about your extremely valuable resource....the adults with ASD that grew up in a world without awareness. The adults who had to adapt on their own without any help or recognition of the disABILITY. The adults who are by the way still alive today. The ones who have held a job. The ones married, raising kids, paying bills, living like average members of society for the most part. The ones who never miss an event at their childs school. The ones who are textbook ASD...the ones who have been that way their entire lives and have adapted and succeeded.

Tell me, how valuable is that. You are studying the children so hard but you have answers right there in your adults. So again I ask, where are the researchers??? I am undiagnosed but ask my mom and lets see, EVERYONE who's ever known me and they'll agree with that..especially my mom. There is another untapped resource. I'm sure my mom has some stories about me because this was a time before everyone had video cameras at the ready.

So where are they? I can't find a place near me that I know of. And the depth of the genetic code goes further than they say because all 3 of my children show significant signs. My brother and 2 sisters show signs. My bio mom definitely shows signs and I have never met my bio dad or that side so I don't know. But since this is a spectrum disorder it makes me think many people are overlooked.
I have a background in Mental Health and I believe this Disorder is not being diagnosed or researched thorough enough. They say 1 in 45 have it but I disagree. That ratio is much larger than it should be. I believe thorough research would change the diagnosis altogether and the stigma attached. We have nursing rooms for breast feeding mothers. We want to make special bathrooms for the transgender community. Can we band together as a community and do something like getting a quiet room in the mall or grocery store. I wish those not on the spectrum knew what the grocery store experience is like. That place is a literal sensory overload. I can smell things through the packaging. When I am in the spice isle I smell spices, the bread isle it's the bread and oh how I hate the meat section.
Research like that in order to cause change not just awareness.
I appreciate the awareness...it's great that you understand that screaming child having a meltdown is ASD. But can we get a place to go please...im sure all the NTs in the place would appreciate it too.

Even in the UK, there isn't actually much help for adults on the spectrum to access, at least not the ones who are high enough functioning to have lived a life already -- despite the fact that that life may have been ten times the struggle it might have been.

I think it's kind of thought that they must not need help or more research done that might result in better help, even though the criteria is about impairment, and that in itself implies that help in one way or another my be considered to be needed or at the very least could improve that person's life.

I think they don't bother doing research and closer examination of the adult autistic late-diagnosed, precisely because it's felt that since they "seem" to have made it through living a life, they must be so "close to normal" that there's nothing interesting to discover that would add anything of value to knowledge of autism.

It's faulty reasoning, and it's also only purely my own speculation on their faulty reasoning, of course. I think there may be truckloads of things of value to find out by researching adults.

But at the moment, it's the lost generation -- or several lost generations.

I would love a "quiet day" at my local supermarket. More urgently, I wish my particular branch would stop constantly changing the layout, moving entire categories of food to a completely different aisle, quitting stocking items (always seem to be my favorite, regular choices too) and generally rearranging. At times I've felt like going to them and telling them have you thought about how ll your changing around may impact local autistic people? But I haven't bothered.

They would probably think that if we're high functioning enough to do our own shopping, we should be able to handle change in the store instead of find it stressful -- I find it very stressful, another "straw on the camel's back" situation (small thing can break you when added to tons of other small things and a few large things that are stressing you in your life) and I'm supposed to be "high functioning"

I am a research participant for the University of Cambridge Autism Research Centre, the Kennedy Krieger Institute/Simons Foundation Interactive Autism Network Research, SPARK Simons Foundation Powering Autism Research for Knowledge as well as some universities.

I am available to them specifically for research of autistic adults. There is already an abundance of research of autistic children. Because I am among those autists who consider genetic research to be driven primarily to determine ways of "curing" or "eradicating" autism, as opposed to accepting or mitigating its more severe behaviors and characteristics when the individual autist accepts such mitigation, I don't agree to such research. But, I do respect those autists who choose to agree.

In these ways, I help to focus the attention to autism on adults who have survived a lifetime turning self-doubt into self-acceptance.

Unfortunately, I am rarely invited to join in any research let alone research of adults. This tells me that researchers are still paid to research children, but not adults. I believe that my age, as reported in all my research demographic information, is discounted.

BirdInFlight I think a quiet day would be a fabulous idea.
AspieUtah that is it exactly. They are getting paid to research children. Genetic research is a difficult subject and finding a cure could be 1 or 100 years away. I feel like in the meantime more focus can be on maintenance of the disorder. We can really be a help to parents going through real world stress with a child. I just see such a value in experiences. My sister recognizes her daughter, my niece, is my little clone so she really calls on me to explain what is going on in my nieces head. Maybe a mentorship program with ASDs mentoring ASDs. That would be interesting.

I choose engineering as a career rather than science 30 years ago--it was painfully obvious that there were very few opportunities in the sciences--and those few had to have some sort of obvious monetary payback to your employer.

What happened in the USA is that after the war, when we had the baby boom, we had the luxury of granting tenure to academics who were teaching baby boomers, so they could study interesting things, rather than only those things in which one could get paid to do. This actually worked for a while, but now that it doesn't, there isn't anything to replace that.

http://www.nea.org/home/33067.htm
SURVEYS show clearly that tenured generally publish more, serve on committees and teach more than their untenured colleagues. On average, faculty work 52 hours per week

These days people vote for lower taxes, not valuable research that may improve the quality of life.

https://en.wikipedia.org/wiki/William_Proxmire
He actively discouraged scientific research with his Golden Fleece award.

It has occurred to me that me that we may have lost a generation of research done by Aspies. When I was newly employed I could actually do a full time job and do some interesting personally funded research after work. No time for romantic relationships, but that didn't bother me. These days there is so much of an emphasis on being normal that I doubt that happens anymore--folks try so hard to be normal that they never spend enough time to fully develop their talents for research--there is no substitute for hours and hours of actually doing stuff. Instead, you have obsessions and such, but no actual activity.

Where is it?. For all intents and purposes non existent.
Adult, Autistic, and Forgotten More than $330 million is spent each year on autism research—but only 1 percent of that is focused on adults.

Of course a lot of us were sent away to institutions and hidden away but many of us were in school, workplaces in our neighborhoods. That an very supportive author who basically gets it would write this important misinformation actually demonstrates how right her argument is.

Last edited by ASPartOfMe on 27 Aug 2016, 12:50 pm, edited 1 time in total.

And, if an autistic adult is able to find assistance and supports, they are offered by means of "transitioning" to independence which can be defined quite restrictively and rigidly. The lesson learned can be "play along or leave."

I'm 60, dx'd at 58, and am taking part in a research thing being done by my local NHS authorities (in UK). The research isn't into how I coped with being un dx asperger (i.e. having parents wealthy enough to intervene before I ended up as a mentally ill tramp), the research is being done into how good, or not, the local set up is for diagnosing adults.

So I've told 'em.

Not sure, but I think it might be a national thing, there's hundreds of us late dx ers involved.

Just signed a consent form to become personally involved, so might be meeting up with people in white coats again soon, or I might just be filling out loads of forms.

What is specially needed is massive wholesale reform of the mental health system and the education of the population out of a mindset that is positively medieval. Can't see that happening soon.

I just don't think adults are as appealing as children to most researchers, funding agencies, clinicians. Autism is considered a tragic disorder, so the people with it must be pitiful and dependent. People find pitiful adults to be repugnant, but pitiful children evoke sympathy for the parents at the least.

This is an interesting thought. I think that there is definitely a bounty of research that could have been done by autistic people that wasn't done then, and isn't being done now. However, there was some interesting research posted here recently by Ettina on her Abnormal Diveristy blog (https://abnormaldiversity.blogspot.ca), so it's being done by some.

While I agree that part of the issue is the focus on normality, I think the changes in society (economic, educational) and the professionalization of science are major factors. Participation in science is discouraged unless one is an academic, which is a very political profession for which one needs multiple degrees. Thus, there are economic, social, and educational barriers to science participation in our culture, which has become somewhat anti-DIY, IMO.

The bulk of the existing research has huge sampling biases and these are driven to some extent by politics, not science per se. The main and obvious ones are:

Gender bias - most of the research has been male-only or male-dominated samples. Perhaps related to this is the fact that much of the research funding comes from Autism Speaks, which is a gender-biased organisation; Autism Speaks chose to use the blue colour to symbolise autism "because blue represents boys". They reinforce false stereotypes very actively to exclude ASD ability and competencies, ASD adults and particularly females on the spectrum of all ages.

Age bias - Autism Speaks wants to eradicate autism, cure it, make children "grow out of it". The first goal is repugnant, IMO, the second fatuous, and the third dangerously harmful. All of these motivations affect the funding decisions it makes of course, and the notion of ASD adults living

Competency bias - the autism research largely ignores competencies across the whole autistic population.

Tracking studies of sample subjects over time - the research has not even been attempted, let alone completed. This is a shameful omission.

In New Zealand there is an ongoing and now world famous study which began to track a huge sample of children born in 1971. No doubt a tiny proportion of them were on the spectrum too, though their development is not one of the study goals. The subjects are interviewed and tested thoroughly on a continuing annual basis. The findings have been of immense value in dispelling former myths and establishing some new conceptualisations about developmental years and adult outcomes. These studies are costly in money, time and expertise input, though have a utility that is far more informative than usual reductionist, one-off experimental studies with small samples.

Yes, the AS adults are missing in action. The heuristic criteria for diagnosis are another source of bias in studies. The criteria are selective rather than comprehensive and behavioural rather than personally biographical, so adults who have learned to adjust, to mask, to pass, or who simply don't fit those particular rule of thumb heuristics would be excluded from adult research even if there was scientific and political will to do it, unless good design to enable good sample recruitment took place first.

The politics of autism are invasive in so many ways, and the science of autism has not been a neutral endeavour untouched by that background, far from it. The "disease" mentality of ASD researchers is also a huge source of bias in that it shapes the type and scope of the questions asked, the theory which is formulated, disguising the questions not asked, the theories not tested.

How can we be sure you aren't Prince Andrew?!?

Seriously, I wonder if nations like the United States are waiting for other nations like the United Kingdom to do the research that both want, but, for whatever political reasons, can't do.