HealthyGamerGG | Primer on Autism Spectrum Disorder @HealthyGamerGG | Uploaded 1 month ago | Updated 6 hours ago
Producer's Update
After this livestream, we realized that some of the terms used in this stream are outdated or controversial. Chief among them is the use of "tantrums" instead of "meltdowns" and deficit-centric language (support needs vs functioning). We will do better in the future to examine the language and terminology used. At the heart of the issue is that the research and academic communities have not always respected the lived experience of those living with Autism, and the vocabulary around neurodivergence is evolving.
Going forward, we are evolving our own research process to:
1) Look at lived experience as well as academic research
2) Be more receptive to live feedback (this is extremely difficult live, but we'll work on it)
3) Include more clinical and/or lived experience collaborators
We also heard positive feedback from the HG Community (23K votes, 94% in favor of keeping the stream up). Comments noted that the information contained was helpful and explanatory especially for those early in seeking a diagnosis. We hope to followup with more depth using the improved process described above.
We believe strongly in respecting the lived experience and individuality of our community, and all Healthy Gamer experiences (content, coaching, and community) are founded on bridging lived experience with high-integrity research.
Researcher's Notes
The research papers used to prepare for this stream are here: explore.healthygamer.gg/citations
ABA Abuse:
ABA therapy currently is different than past versions of ABA. There are methods of ABA we would consider abusive, so the studies we reference do NOT include any of those methods. As we pointed out in the stream, we are NOT advocating for ABA. HG believes in a person's right to choose their preferred treatment path (and is indeed why we started creating mental health content in the first place!).
Some lore: The authors of the abuse paper are not researchers, they work for a company that sells educational aids to children with special needs. There is another paper published by academics in Behavioral Science that refuted the claims of the authors in the abuse paper. The academics demonstrated with data and analysis that the abuse paper's claims that ABA doesn't have evidence is wrong. They show many studies that show efficacy for ABA. The authors in the abuse paper do not reference any data. They reference another paper they wrote that also doesn't have data. Furthermore the abuse paper specifically says that the authors are speaking about a subsection of young autistic children with no verbal skills. The paper we show on stream does NOT have any young children with no verbal skills. We can see this in the demographics table. The study shown is using ABA to help adolescents visualize working through tasks. However, this ABA protocol appears that it still may meet the criteria for abuse as described by critics of ABA therapy. It is an unfortunate reality that most medical research done on minors is without their consent and parents deciding for them.
Research critiques: There is a claim that we are looking at outdated research and that is not true. All of the papers cited are within the last five years. We did look into the double empathy theory. It appears from the research that most modern treatments are utilizing this theory and changing to be less problematic. We went into extensive detail about this in the research process. The research on gut microbiome and autism is nascent and needs more investigation, and it is currently a provocative subject in the academic discourse. Critics says that autism and gut issues are about stress, but there is research to state there are more factors than stress. The case report we examined last week about reversing symptoms actually used targeted diets to alter the gut microbiome as part of its therapeutic modalities. There is also a broad growing body of evidence that the gut microbiome is related to neurological functioning. There are claims that the research process for this primer was not extensive, but I think I have demonstrated the contrary.
--
Comprehensive mental health resources here: explore.healthygamer.gg/mentalhealthresources
DISCLAIMER
Healthy Gamer is an online community and resource platform for gamers and their families. It does not provide medical services or professional counseling, and it is not a substitute for professional medical care. Our coaches are peer supporters, not professionally trained experts, and they cannot provide medical service. If you or a loved one are experiencing an emergency, please call your nation's emergency telephone number.
All guests of Healthy Gamer are informed of the public, non-medical nature of the content and have expressly agreed to share their story.
Producer's Update
After this livestream, we realized that some of the terms used in this stream are outdated or controversial. Chief among them is the use of "tantrums" instead of "meltdowns" and deficit-centric language (support needs vs functioning). We will do better in the future to examine the language and terminology used. At the heart of the issue is that the research and academic communities have not always respected the lived experience of those living with Autism, and the vocabulary around neurodivergence is evolving.
Going forward, we are evolving our own research process to:
1) Look at lived experience as well as academic research
2) Be more receptive to live feedback (this is extremely difficult live, but we'll work on it)
3) Include more clinical and/or lived experience collaborators
We also heard positive feedback from the HG Community (23K votes, 94% in favor of keeping the stream up). Comments noted that the information contained was helpful and explanatory especially for those early in seeking a diagnosis. We hope to followup with more depth using the improved process described above.
We believe strongly in respecting the lived experience and individuality of our community, and all Healthy Gamer experiences (content, coaching, and community) are founded on bridging lived experience with high-integrity research.
Researcher's Notes
The research papers used to prepare for this stream are here: explore.healthygamer.gg/citations
ABA Abuse:
ABA therapy currently is different than past versions of ABA. There are methods of ABA we would consider abusive, so the studies we reference do NOT include any of those methods. As we pointed out in the stream, we are NOT advocating for ABA. HG believes in a person's right to choose their preferred treatment path (and is indeed why we started creating mental health content in the first place!).
Some lore: The authors of the abuse paper are not researchers, they work for a company that sells educational aids to children with special needs. There is another paper published by academics in Behavioral Science that refuted the claims of the authors in the abuse paper. The academics demonstrated with data and analysis that the abuse paper's claims that ABA doesn't have evidence is wrong. They show many studies that show efficacy for ABA. The authors in the abuse paper do not reference any data. They reference another paper they wrote that also doesn't have data. Furthermore the abuse paper specifically says that the authors are speaking about a subsection of young autistic children with no verbal skills. The paper we show on stream does NOT have any young children with no verbal skills. We can see this in the demographics table. The study shown is using ABA to help adolescents visualize working through tasks. However, this ABA protocol appears that it still may meet the criteria for abuse as described by critics of ABA therapy. It is an unfortunate reality that most medical research done on minors is without their consent and parents deciding for them.
Research critiques: There is a claim that we are looking at outdated research and that is not true. All of the papers cited are within the last five years. We did look into the double empathy theory. It appears from the research that most modern treatments are utilizing this theory and changing to be less problematic. We went into extensive detail about this in the research process. The research on gut microbiome and autism is nascent and needs more investigation, and it is currently a provocative subject in the academic discourse. Critics says that autism and gut issues are about stress, but there is research to state there are more factors than stress. The case report we examined last week about reversing symptoms actually used targeted diets to alter the gut microbiome as part of its therapeutic modalities. There is also a broad growing body of evidence that the gut microbiome is related to neurological functioning. There are claims that the research process for this primer was not extensive, but I think I have demonstrated the contrary.
--
Comprehensive mental health resources here: explore.healthygamer.gg/mentalhealthresources
DISCLAIMER
Healthy Gamer is an online community and resource platform for gamers and their families. It does not provide medical services or professional counseling, and it is not a substitute for professional medical care. Our coaches are peer supporters, not professionally trained experts, and they cannot provide medical service. If you or a loved one are experiencing an emergency, please call your nation's emergency telephone number.
All guests of Healthy Gamer are informed of the public, non-medical nature of the content and have expressly agreed to share their story.
