What are some pivotal research papers you'd recommend reading on ASD?

[Boachii]

Hello,

I wanted to better understand ASD, so about 6 months ago I started looking up academic papers. Very quickly, I became over whelmed with all the information and I was shocked at how much information was available! The public opinion I saw online gave the impression there wasn't much studied/written on ASD beyond personal accounts but this wasn't the case?

I decided to go back and start with the first papers written on ASD. I wanted to have an idea on what the current papers might be referencing. Here are the paper's I've read so far:

-Dementia Praecox of the Group of Schizophrenias by Eugen Bleuler 1911

-Grunya Sukhareva: Clinical lectures on children's psychiatry. part 1 (S. Wolff translation)

-Grunya Sukhareva: Clinical lectures on children's psychiatry. Part 2. (Charlotte Simmonds 2019 translation and Rebecchi K's 2020 translation)

-Grunya Sukhareva: To the problem of the structure and dynamics of children's constitutional psychopathies (schizoid forms). (William S. New & Hristo Kyuchukov's 2022 Translation)

-Autistic Psychopathy' in childhood by Hans Asperger 1944 (Uta Frith's translation)

-Autistic Disturbances in of Affective Contact by Leo Kanner (1943)

- Pioneering, prodigious and perspicacious: Grunya Efmovna Sukhareva’s life and contribution to conceptualising autism and schizophrenia by David Ariel Sher & Jenny L. Gibson. 2021 (This one helped me understand Grunya's part 2 better)

Does anyone have any recommendations on other papers to read? Advice on what to read next? Currently, I look at the citations and just... look up those papers to read next, is that typical? I would really love to compare the old paper's to current paper's that reference the old papers

Also, disclaimer: I have no research experience. I have a bachelor's degree but honestly, I am just blindly wondering around in the dark picking up papers to read

Thank you!

 

[Neonatal RRT]

Advice: Go to a search engine like Google Scholar, PubMed, or Medline. Limit your search to say, the most recent 5 years, in fact, I typically limit the searches to the past 3 years. Some of the research prior to 2010 is fundamentally false, yes, we've learned quite a bit just within the past few years that would change what we previously thought about autism to a significant degree. Furthermore, one must be specific to the autistic population in which you are seeking information, as pediatric autism is different than adult autism, ASD 3 is different than ASD 2, and different than ASD 1 (Aspergers condition). Female autism may also present different than male autism.

I also filter out my YouTube autism lecture filters to the past few years, as well. Knowledge on the topics has changed.

When you search the topic of autism, be very specific. "Adult female Asperger's and fMRI", "Dopamine turnover in Asperger's", "Pediatric autism and oxytocin", etc. Perspective and context is extremely important as not all autism is the same. Filtering for specific populations is key to obtaining the correct information.

 

[Judge]

"Pivotal research" ? Dry medical research can be good and bad, but in this instance virtually all of it is conducted by medical professionals who are neurotypical- not neurodiverse. Quite literally on a secondhand basis.

If exclusively for your own edification that you wish to learn some "pivotal" information pertinent to autism, stay here and do both a lot of reading as well as interacting with autistic people firsthand. -Up close and personal, so to speak. Something you won't get perusing over very dry medical data done by an NT medical community that isn't always on the same page as their peers.

Keeping in mind that among our ranks to my knowledge we have only one neurodiverse M.D.. The rest of us share a broad understanding of autism, based largely on our own perspective and experiences as autistic people having to exist in an environment overwhelmingly dominated by neurotypicals.

In essence, rather than focus on us as a source of autistic medical information,consider focusing on us as autistic people. You just might find us more interesting and engaging in this respect.

 

[Rodafina]

@Boachii
Did you check out our Resources section yet?

 

[Boachii]

Advice: Go to a search engine like Google Scholar, PubMed, or Medline. Limit your search to say, the most recent 5 years,...in fact, I typically limit the searches to the past 3 years. Some of the research prior to 2010 is fundamentally false,...yes,...we've learned quite a bit just within the past few years that would change what we previously thought about autism to a significant degree. Furthermore, one must be specific to the autistic population in which you are seeking information, as pediatric autism is different than adult autism, ASD 3 is different than ASD 2, and different than ASD 1 (Aspergers condition). Female autism may also present different than male autism.

I also filter out my YouTube autism lecture filters to the past few years, as well. Knowledge on the topics has changed.

When you search the topic of autism, be very specific. "Adult female Asperger's and fMRI", "Dopamine turnover in Asperger's", "Pediatric autism and oxytocin", etc. Perspective and context is extremely important as not all autism is the same. Filtering for specific populations is key to obtaining the correct information.

Hi !!
Thank you so much for responding! When I originally found this site yesterday, I came across your comment about this paper: Broad transcriptomic dysregulation occurs across the cerebral cortex in ASD. I've been glancing over it, it's very complex and detailed.. and I was very excited about how advanced its topic was!! Especially, when comparing it to papers from the early 1900s, lol!

I appreciate your advice and tips. I also noticed the early 2000s.. til 2010s... has .. a lot of unhelpful information... I'm relieved to hear it's all basically false. Would happen to know what happened around 2018/2019 with information on ASD? It seems like there is a huge influx of information on the Adult ASD topic? I was surprised to realize some of Grunya's papers were translated so closely, back-to-back.

When it comes to the topic of Autistic/ASD adults is there anyone in the field you specifically stay up to date on?

Thank you again for all the advice, it'll really smooth out my research process !

 

[Boachii]

@Boachii
Did you check out our Resources section yet?

Hello ! No, I got excited and came over here asap. Where would that be located, exactly?

 

[Rodafina]

https://www.autismforums.com/resources/

 

[Stuttermabolur]

Hello,

I wanted to better understand ASD, so about 6 months ago I started looking up academic papers. Very quickly, I became over whelmed with all the information and I was shocked at how much information was available! The public opinion I saw online gave the impression there wasn't much studied/written on ASD beyond personal accounts but this wasn't the case?

I decided to go back and start with the first papers written on ASD. I wanted to have an idea on what the current papers might be referencing. Here are the paper's I've read so far:

-Dementia Praecox of the Group of Schizophrenias by Eugen Bleuler 1911

-Grunya Sukhareva: Clinical lectures on children's psychiatry. part 1 (S. Wolff translation)

-Grunya Sukhareva: Clinical lectures on children's psychiatry. Part 2. (Charlotte Simmonds 2019 translation and Rebecchi K's 2020 translation)

-Grunya Sukhareva: To the problem of the structure and dynamics of children's constitutional psychopathies (schizoid forms). (William S. New & Hristo Kyuchukov's 2022 Translation)

-Autistic Psychopathy' in childhood by Hans Asperger 1944 (Uta Frith's translation)

-Autistic Disturbances in of Affective Contact by Leo Kanner (1943)

- Pioneering, prodigious and perspicacious: Grunya Efmovna Sukhareva’s life and contribution to conceptualising autism and schizophrenia by David Ariel Sher & Jenny L. Gibson. 2021 (This one helped me understand Grunya's part 2 better)

Does anyone have any recommendations on other papers to read? Advice on what to read next? Currently, I look at the citations and just... look up those papers to read next, is that typical? I would really love to compare the old paper's to current paper's that reference the old papers

Also, disclaimer: I have no research experience. I have a bachelor's degree but honestly, I am just blindly wondering around in the dark picking up papers to read

Thank you!

I concur with what @Neonatal RRT wrote about searching for papers. You can then go in the opposite "direction" and read older papers which the new papers reference if you are curious about specific facets of autism. Keep in mind that you can easily be "swamped" by citations, so I recommend only looking at ones you are very interested in.

If you are specifically interested in pivotal research, I recommend looking at articles from high impact journals like Nature, Science (as well as subsidiaries like Nature Communication and Science Advances), Cell or Proceedings of the National Academy of Science (PNAS). They are high quality, impactful/pivotal and are based on a lot of prior research. Searching for autism at any of those higher impact journals should give you info on larger stories within the field of autism research.

@Judge, while I agree that you will gain a much better understanding of autism itself from speaking with people on the spectrum, you can also gain medical information about how autism manifests from reading journal articles which you are unlikely to come across just from talking. To be honest, I also think you are much more likely to encounter autism among scientists than among the general population (being a scientist myself), and I wouldn't be surprised to learn that a significant portion of people doing biomedical (not psychological) research into autism are on the spectrum themselves and gained an interest in the field that way.

 

[Judge]

@Judge, while I agree that you will gain a much better understanding of autism itself from speaking with people on the spectrum, you can also gain medical information about how autism manifests from reading journal articles which you are unlikely to come across just from talking. To be honest, I also think you are much more likely to encounter autism among scientists than among the general population (being a scientist myself), and I wouldn't be surprised to learn that a significant portion of people doing biomedical (not psychological) research into autism are on the spectrum themselves and gained an interest in the field that way.

At that point I think it depends on exactly what one is researching relative to autism.

Biomedical information pertinent to autism is definitely a consideration, but I think it's confined in its scope when considering autistic people. But I suspect that reflects a dynamic in science in general. That it tends to focus on things rather than people.

 

[Neonatal RRT]

Hi !!
Thank you so much for responding! When I originally found this site yesterday, I came across your comment about this paper: Broad transcriptomic dysregulation occurs across the cerebral cortex in ASD. I've been glancing over it, it's very complex and detailed.. and I was very excited about how advanced its topic was!! Especially, when comparing it to papers from the early 1900s, lol!

I appreciate your advice and tips. I also noticed the early 2000s.. til 2010s... has .. a lot of unhelpful information... I'm relieved to hear it's all basically false. Would happen to know what happened around 2018/2019 with information on ASD? It seems like there is a huge influx of information on the Adult ASD topic? I was surprised to realize some of Grunya's papers were translated so closely, back-to-back.

When it comes to the topic of Autistic/ASD adults is there anyone in the field you specifically stay up to date on?

Thank you again for all the advice, it'll really smooth out my research process !

It's been my observation that prior to 2010, there were some imaging and physiology studies, but our techniques and technologies were not there for a "compelling argument". Prior to the 2010's the predominant theories around autism were from a psychological and psychiatric perspective. In the 2020's, we finally had the imaging technologies and the laboratory testing to actually change the narrative from a psychological/psychiatric model to more of a medical/anatomical/physiological/genetic model. In other words, the psychology and psychiatry of the "core autism" characteristics is secondary to the anatomy, physiology, and genetics.

It's my hope that the social aspects of "legitimizing" the diagnosis of autism amongst the public is to move the diagnosis into the medical model, by having it diagnosed, in part, by neurologists and geneticists. As a society, we need to recognize the brain, as another organ, like a heart, a lung, a kidney, etc. I don't know of anyone who would put a "social stigma" on someone with heart, lung, or kidney disease, but with the brain, the symptomatology is expressed by behaviors, and human beings generally have a difficult time with people "acting differently". Having public education that autism is as a result of a structurally and functionally different brain,...and how the message is delivered, hopefully in a positive light,...will be an important step towards social acceptance and inclusivity.

 

[Magna]

I posed your question to ChatGPT, an Artificial Intelligence chatbot that's pretty incredible to interact with. Here is its answer. Also, the answer was given within a second or two from me entering it:

"There are many research papers that have been published on the topic of autism, covering a wide range of topics such as causes, symptoms, diagnosis, and treatments. Here are a few notable papers that have made significant contributions to the field of autism research:

1. "Autistic Disturbances of Affective Contact" by Leo Kanner, first published in 1943, is considered one of the first comprehensive descriptions of the condition that would later be known as autism.
2. "Theory of Mind in Normal Development and Autism" by Simon Baron-Cohen, Alan Leslie, and Uta Frith, published in 1985, proposed the idea that individuals with autism have difficulties with understanding the mental states of others, a concept known as "theory of mind."
3. "Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014" by the Centers for Disease Control and Prevention (CDC) in 2018, reported the most recent estimate of the prevalence of autism in the United States.
4. "A randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver Model" by Sally J. Rogers, Geraldine Dawson, and others, published in 2010, found that early intervention using the Early Start Denver Model led to significant improvements in cognitive, language, and adaptive skills in young children with autism.
5. "The Role of Oxytocin in Social Cognition and Behavior" by Paul J. Zak, published in 2008, proposed the idea that the hormone oxytocin may play a role in social behavior and cognition, and that it may be a potential target for interventions in autism.

These papers are not an exhaustive list, and many more research papers have been published on the topic of autism. It's important to note that research on autism is ongoing and new findings are constantly being published, so it's important to keep abreast of the latest developments in the field."

 

[Boachii]

I concur with what @Neonatal RRT wrote about searching for papers. You can then go in the opposite "direction" and read older papers which the new papers reference if you are curious about specific facets of autism. Keep in mind that you can easily be "swamped" by citations, so I recommend only looking at ones you are very interested in.

If you are specifically interested in pivotal research, I recommend looking at articles from high impact journals like Nature, Science (as well as subsidiaries like Nature Communication and Science Advances), Cell or Proceedings of the National Academy of Science (PNAS). They are high quality, impactful/pivotal and are based on a lot of prior research. Searching for autism at any of those higher impact journals should give you info on larger stories within the field of autism research.

@Judge, while I agree that you will gain a much better understanding of autism itself from speaking with people on the spectrum, you can also gain medical information about how autism manifests from reading journal articles which you are unlikely to come across just from talking. To be honest, I also think you are much more likely to encounter autism among scientists than among the general population (being a scientist myself), and I wouldn't be surprised to learn that a significant portion of people doing biomedical (not psychological) research into autism are on the spectrum themselves and gained an interest in the field that way.

Hi @Stuttermabolur !

Thank you for recommending high impact journals. I had no idea about them! I google'd the term high impact journals and it seems they are the modern day version of printing research papers into a digital sphere (uploading to websites)? Do I understanding this correctly? Earlier today, I saw a DOI on a Nature article which REALLY confused me. I was under the impression I was reading an article NOT an academic/research paper (???) The article was 1000 words with no clear citations? Sorry for my confusion, I'm not use to reading published articles online.

Do you have tips on how keep your research organized? Currently, I'm using Microsoft Notes.

Thank you for all this is great information !

 

[Stuttermabolur]

Hi @Stuttermabolur !

Thank you for recommending high impact journals. I had no idea about them! I google'd the term high impact journals and it seems they are the modern day version of printing research papers into a digital sphere (uploading to websites)? Do I understanding this correctly? Earlier today, I saw a DOI on a Nature article which REALLY confused me. I was under the impression I was reading an article NOT an academic/research paper (???) The article was 1000 words with no clear citations? Sorry for my confusion, I'm not use to reading published articles online.

Do you have tips on how keep your research organized? Currently, I'm using Microsoft Notes.

Thank you for all this is great information !

Journals are generally both printed and distributed online. However, the vast majority of people read the online versions, and it's mostly university libraries which buy physical copies since they are expensive, and people are mostly interested in papers related to their field of interest (as you are). If the article appeared in Nature, it was probably also published in their magazine and written by a scientist with deep knowledge in the field. They don't only publish research papers but also columns and news stories. DOI helps in managing files and is mostly used by research papers, but that doesn't mean it's exclusively used by them. I have also seen DOI used with textbook chapters.

When it comes to keeping your research organized, I personally use Mendeley. It's a file organization site which makes it very simply to sort your research papers. If you find an interesting paper, you can simply type in the DOI or title, and a copy with all authors and journal information will appear, which you can then sort according to your needs. A .pdf version is not always included, but you can also connect .pdf files to the Mendeley copy if you have them. I recommend playing around with the program for a bit and seeing what you can do. You can either use a browser version, or download the program.​

 

[Suzanne]

I would never trust those who do not have aspergers, who are the ones talking about ASD. Rather, when I was looking into ASD, I went to real life examples.

So, rather than keeping within the box, I go out side the box and find it far more accurate.

 

[Azul]

Milton Damian, 2012. On the onthological status of autism: the double empathy problem.

Seems to be an essential sociological paper on autism. It's a whole new paradigm.

.

Now, regarding papers that I found relevant or merely interesting, but that I don't know it's impact:

I found Janette Dinishak's 'The deficit view and its critics' very interesting. I don't know if it's that impactful, though.

Michele Dawson, in conjunction with Laurent Mottron, also publishes papers that challenge the usual assumptions about it. I've only read 'Should we change targets and methods of early intervention on autism, in favor of a strengts-based education?' from them, but I plan to read more.

I liked reading through Ben Belek's papers on an anthropological view of the condition.

So far, I think I like to read on sociological perspectives about autism. It's what I've been focused on, without noticing til now. I'm doing an undergrad dissertation on it, inside my field, although I have not read that much, and I'm also overwhelmed with the information available.

(Both Dawson and Milton are autistics, by the way)

 

[Au Naturel]

Hello,

I wanted to better understand ASD, so about 6 months ago I started looking up academic papers. Very quickly, I became over whelmed with all the information and I was shocked at how much information was available! The public opinion I saw online gave the impression there wasn't much studied/written on ASD beyond personal accounts but this wasn't the case?

I decided to go back and start with the first papers written on ASD. I wanted to have an idea on what the current papers might be referencing. Here are the paper's I've read so far:

-Dementia Praecox of the Group of Schizophrenias by Eugen Bleuler 1911

-Grunya Sukhareva: Clinical lectures on children's psychiatry. part 1 (S. Wolff translation)

-Grunya Sukhareva: Clinical lectures on children's psychiatry. Part 2. (Charlotte Simmonds 2019 translation and Rebecchi K's 2020 translation)

-Grunya Sukhareva: To the problem of the structure and dynamics of children's constitutional psychopathies (schizoid forms). (William S. New & Hristo Kyuchukov's 2022 Translation)

-Autistic Psychopathy' in childhood by Hans Asperger 1944 (Uta Frith's translation)

-Autistic Disturbances in of Affective Contact by Leo Kanner (1943)

- Pioneering, prodigious and perspicacious: Grunya Efmovna Sukhareva’s life and contribution to conceptualising autism and schizophrenia by David Ariel Sher & Jenny L. Gibson. 2021 (This one helped me understand Grunya's part 2 better)

Does anyone have any recommendations on other papers to read? Advice on what to read next? Currently, I look at the citations and just... look up those papers to read next, is that typical? I would really love to compare the old paper's to current paper's that reference the old papers

Also, disclaimer: I have no research experience. I have a bachelor's degree but honestly, I am just blindly wondering around in the dark picking up papers to read

Thank you!

I am not sure if this is what you are looking for, but I thought it was interesting: