Future Research You want to see

[Alaska]

I love all the funny comments but seriously... We now have the technology to do what I would like NT's to experience. With VR goggles and some good headphones... Also give them something to make them mildly nauseous or unsteady... Build a program that lets them live in our world for just a little bit...
They might stop some of the bullying when they see how hard it is for us to function every minute of every day in their world.

I don't know how to create "brain racing" in people who don't think, but it would be worth a try and not real expensive.

What you want to do will likely have an unintended effect you probably do not want. They did studies where they took non-disabled people and gave them disabilities for a day. Vaseline on glasses, or earplugs or wheelchairs, were used.

Afterwards the people who did this became anxious about disabled people and wanted to avoid them. Then they became predjudiced against disabled people. The ones who got to be "Autistic" for a day would probably react the same way.

 

[selfhatetoselflove]

I read all of your comments! Thank you so much, guys! I agree with a lot of your comments, especially letting non-autistics to understand our meltdowns, overloading or shutdowns, as well as misdiagnosis and delayed diagnosis for further research. Reading academic articles by non-autistic people, I have been feeling that it is not very much align with our need. I mean it's not very convincing to hear autism research from non-autistic people, isn't it? Thank you again! continue commenting on this, I'll read them all I want to make our voice to be heard through research

 

[SusanLR]

I know there isn't going to be some magic pill to alleviate the prejudice against the disabled. Sure would be nice though. And making an NT experience what the day to day struggle is like in our lives I agree would only freak them out more and just run away like we had the plague.

On a more realistic scientific term, I think we have the technology to show why we are the neurodiverse. Genetic tests and probably PET scans that show how our brains light up compared to NTs. MRIs and even post mortem studies of our brains might show a real physical difference. There has been this type of study of genius' like Einstein's brain and some on psychopathy.
The sensitivities in the sensory areas might be found to have a physical provable reason. And also the way we react differently to medicines. I also have many drug sensitivities and different reactions. I think most autistics do. Doctors need to be made aware of this so we don't suffer from the 'usual' prescribed plans.
I require smaller amounts of most prescription drugs and can still get odd side effects. The many tries I have given antidepressants only failed and could only tolerate minutely small amounts compared to the usual dosage.
I've got RA now and can't take the drugs that are out there for it. Plaquenil raised my liver enzymes. Minocycline started a decline in kidney function. The others they won't even try because I only have half a liver from cancer. And I can't even tolerate corticosteroids.
I worked in pharmaceuticals until I had to go on disability. So these are things I see as important for research.

 

[Streetwise]

i disagree i don't see the drug i was suggesting being magical that is an insulting term .
why constantly enable n.t's i !!!DONT!! idolise them .
i don't need researching, it's n.t's who need their neurones correcting

I know there isn't going to be some magic pill to alleviate the prejudice against the disabled. Sure would be nice though. And making an NT experience what the day to day struggle is like in our lives I agree would only freak them out more and just run away like we had the plague.

On a more realistic scientific term, I think we have the technology to show why we are the neurodiverse. Genetic tests and probably PET scans that show how our brains light up compared to NTs. MRIs and even post mortem studies of our brains might show a real physical difference. There has been this type of study of genius' like Einstein's brain and some on psychopathy.
The sensitivities in the sensory areas might be found to have a physical provable reason. And also the way we react differently to medicines. I also have many drug sensitivities and different reactions. I think most autistics do. Doctors need to be made aware of this so we don't suffer from the 'usual' prescribed plans.
I require smaller amounts of most prescription drugs and can still get odd side effects. The many tries I have given antidepressants only failed and could only tolerate minutely small amounts compared to the usual dosage.
I've got RA now and can't take the drugs that are out there for it. Plaquenil raised my liver enzymes. Minocycline started a decline in kidney function. The others they won't even try because I only have half a liver from cancer. And I can't even tolerate corticosteroids.
I worked in pharmaceuticals until I had to go on disability. So these are things I see as important for research.

 

[Diana McNeil]

As the mother of an Asperger's son whose Seizures were only controlled by GABApentin (& reading of others with the same experience) & the recent literature that specifically links the breakdown in the signaling pathway used by GABA (thus a lack of GABA that is increased with the anticonvulsant GABApentin), I would like to see further research into the possible link between Autistic ppl who suffer with seizures that have only been controlled with GABApentin?

 

[Chance]

What you want to do will likely have an unintended effect you probably do not want. They did studies where they took non-disabled people and gave them disabilities for a day. Vaseline on glasses, or earplugs or wheelchairs, were used.

Afterwards the people who did this became anxious about disabled people and wanted to avoid them. Then they became predjudiced against disabled people. The ones who got to be "Autistic" for a day would probably react the same way.

Your probably very right... I guess its just two different worlds that we cant really duplicate to help others understand...

 

[Chance]

One thing that bothers me above all that is being discussed is...

I read all these articles written by so called "experts", (not talking about anyone here) that often isn't fitting or correct in all situations. Not one of them has lived one second in our shoes... They dont know near as much as they think. Sure we can collect data and thats great, but its when that data is manipulated into crap like the DSM-5 and garbage like that that derails me.

We categorize and define terms, only to often label people as defective and it angers me. I'm not a defect, I am just different.

The term "expert" kind of turns my gut inside out. How can anyone of us be an expert unless we LIVE what what we claim to be so knowledgable about?

I can claim to be an expert on making an 800 horsepower car run under 10 seconds in a quarter mile and then blow the engine in the next pass... Sure I know a lot about cars... But I will never be an expert.

Same with Golf. Its my life. I know soil science like no bodies business, but I still cant out guess the elements, the weather, the insect pressures, 50 different funguses, and countless other things that can cause the greens to start dying very quickly. I am not even an expert in my own LIFE...

If I were I guess I would be perfect and that would make me a god, well its obvious I'm not GOD, and these experts are just well paid opinionated labelers. Sorry I kind of get touchy on this stuff and thats not real good either. : )

 

[tree]

What you want to do will likely have an unintended effect you probably do not want. They did studies where they took non-disabled people and gave them disabilities for a day. Vaseline on glasses, or earplugs or wheelchairs, were used.

Afterwards the people who did this became anxious about disabled people and wanted to avoid them. Then they became predjudiced against disabled people. The ones who got to be "Autistic" for a day would probably react the same way.

Can you give me a link to the study in which the results
were as you're describing?

These activities were assigned in a class I had in Exceptional Individuals
and no one reported experiencing aversion for the disability or
"differently abled." Quite the contrary. It increased awareness of
what day-to-day life was like for people who have low vision, are hard
of hearing, are missing a limb...etc.

 

[wight]

If I could this is the research I would conduct:

Using fMRI, run a series of tests with ND and NT brain responses to stimuli (visual, audio, texture, taste, smell). This would probably have to be done with AS or HFA folks but the point here is to begin to identify the differences in processing and reactions in the brain to stimulus.

Again using fMRI, focus on groups differentiated within the first test set. With further controls of for test conditions. For instance, for ND, rerun the same sensory responses along the ASD spectrum for diagnosed AS, HFA, LFA and for NT (by Myers-Briggs type).

Cross reference brain functional reactions to structure, development, proteins, gene expression. This should lead to multiple cross referenced research and experiments that define the "brain spectrum." Without placement into a broader understanding of the brain, any focus on ASD simply adds to the "they are different" assumption.

For instance, in such an experiment, I would expect to find similarities between Aspbergers and Myers-Briggs ISTJ and INTP.

 

[Mr Allen]

I've been saying for years that currently in the UK, anti discrimination laws that are allegedly supposed to protect us against discrimination in the workplace and in general are not enforced and probably never will be, hence I can't get a job! I've just took an application form to Toys R Us on Meadowhall Retail Park but I know for a factual fact I won't get the job, because part of the application process is a Medical, and they'll say I'm "too disabled" to work for them.

 

[Chance]

If I could this is the research I would conduct:

Using fMRI, run a series of tests with ND and NT brain responses to stimuli (visual, audio, texture, taste, smell). This would probably have to be done with AS or HFA folks but the point here is to begin to identify the differences in processing and reactions in the brain to stimulus.

Again using fMRI, focus on groups differentiated within the first test set. With further controls of for test conditions. For instance, for ND, rerun the same sensory responses along the ASD spectrum for diagnosed AS, HFA, LFA and for NT (by Myers-Briggs type).

Cross reference brain functional reactions to structure, development, proteins, gene expression. This should lead to multiple cross referenced research and experiments that define the "brain spectrum." Without placement into a broader understanding of the brain, any focus on ASD simply adds to the "they are different" assumption.

For instance, in such an experiment, I would expect to find similarities between Aspbergers and Myers-Briggs ISTJ and INTP.

Mine is INTJ-t, maybe also group the study by IQ just so there is some relevance in the answers but not classify or label people by that standard in any way.

 

[Chance]

I've been saying for years that currently in the UK, anti discrimination laws that are allegedly supposed to protect us against discrimination in the workplace and in general are not enforced and probably never will be, hence I can't get a job! I've just took an application form to Toys R Us on Meadowhall Retail Park but I know for a factual fact I won't get the job, because part of the application process is a Medical, and they'll say I'm "too disabled" to work for them.

Hey Rich,
Keep trying buddy... Maybe ask them if you can stock, or work in shipping, and work your way up from there. Get creative on how to get in the door. On the medical... Politely call them on this... Nicely tell them you feel you are being discriminated against and you just want a chance. Don't give up, you will land a good job I got faith in you buddy. : )

 

[Alaska]

Your probably very right... I guess its just two different worlds that we cant really duplicate to help others understand...

Something that people of all different kinds say a lot is about having other people "understand" what they are going through. I do not think we need for them to do that so much as to be tolerant of our differences.

I was an ADA representative for a transit system in a large city. I was supposed to represent all kinds of people with widely varying disabilities. They did the thing with some drivers and administrators to let them experience what it was like to have disabilities with the vaseline on glasses, etc. it had the same effect on most of them that the earlier study I mentioned had. Some seemed afraid of disabled after that, then hostile. I would not like to see that happen towards us.

If you even try that, assuming it would help then it would take a ridiculous amount of time to understand every disability.

All we really need is tolerance and respect. Everything else would follow from that.

 

[Alaska]

Can you give me a link to the study in which the results
were as you're describing?

These activities were assigned in a class I had in Exceptional Individuals
and no one reported experiencing aversion for the disability or
"differently abled." Quite the contrary. It increased awareness of
what day-to-day life was like for people who have low vision, are hard
of hearing, are missing a limb...etc.

I don't know whether I can or not. It was done a long time ago and. Since then it has become very popular to do the pretending to be disabled for a day thing. Unpopular information is often buried. I will look, though.

Everyone who participated in the disabled for a day thing praised it highly shortly afterwards and continued to do so even when most were starting to avoid disabled people. I felt it was a problem with an apparently simple solution and a quick fix that looks good at first.

 

[Alaska]

Can you give me a link to the study in which the results
were as you're describing?

These activities were assigned in a class I had in Exceptional Individuals
and no one reported experiencing aversion for the disability or
"differently abled." Quite the contrary. It increased awareness of
what day-to-day life was like for people who have low vision, are hard
of hearing, are missing a limb...etc.

This is not the one I was looking for, but it has some of the information I was talking about:

Disability-related Simulations: If, When, and How to Use Them in Professional Development

I do not want to keep looking right now for the original one I was talking about because I am busy processing some stuff about where Autistic people fit into the scheme of things.

 

[SusanLR]

i disagree i don't see the drug i was suggesting being magical that is an insulting term .

Sorry if my sarcasm of how NTs are predjudice offended you. That's why I used the word, because it would be nice to not be put down for a disability or being different by those who consider themselves normal or better than, but, I don't see that happening. It would have to be what they call a wonder drug (hope that is a better term), which I doubt can ever be made, to change their thinking. The only thing that can change that way of thinking would be compassion and love. Something I see little of in the world.

 

[tree]

@Alaska
Thanks.

The conclusion was that poorly designed simulations could have
a negative effect. Yeah, doing things poorly frequently leads to
negative outcomes, in general.

 

[the_tortoise]

What you want to do will likely have an unintended effect you probably do not want. They did studies where they took non-disabled people and gave them disabilities for a day. Vaseline on glasses, or earplugs or wheelchairs, were used.

Afterwards the people who did this became anxious about disabled people and wanted to avoid them. Then they became predjudiced against disabled people. The ones who got to be "Autistic" for a day would probably react the same way.

That's sad...here are some links I found about it:

Crip for a Day: The Unintended Negative Consequences of Disability Simulations. - PubMed - NCBI

Hiram College | Hiram study examines disability simulation

 

[the_tortoise]

I would like to see a study that looks at family perceptions of autism from the point of view of the person with autism....you see a lot of studies that attempt to get qualitative info from parents and siblings about their life and relationship with their autistic family member, but I don't think I've ever seen a study that looks at how autistic people perceive their relationships with their non-autistic family members (and how that affects their outcomes in all sorts of areas of their life).....

It seems like in the professional world it's just kind of assumed that parents and siblings are always supportive and great, but in reality that doesn't always happen. Plenty of autistic people come from families that are not exactly a model of support and healthy relationship dynamics...or are blatantly unsupportive and/or abusive. And when autistic people are well supported and understood (even if also mistreated at some times or in some ways -- it's not always black and white) by our families, what does that look like for us, from our perspective? What it is it that is helpful to us from our point of view? What kinds of things do autistics commonly experience in their families related to support and understanding?

This kind of research could inform guidebooks for families and caregivers, or help identify unmet areas of need for autistic people and our families.