Research for eating disorders in autism

[Aspychata]

The questions are worded quite broadly which skews the data collected and refutes the validity of this clinical research in my opinion.

 

[Jordy]

This research cannot be validated as it is based on anonymous answers… This researcher has no idea if we say we are who we are. I could answer as a male and they would have no idea whether or not I actually am one. The anonymity of an Internet forum does not support sound research.

It wouldn't be sound research, but they didn't say they where going to use the answers from this thread as part of the research they are planning to do. Whether or not they are going to do a proper honest research is completely out of our control anyway.

 

[Rodafina]

It wouldn't be sound research, but they didn't say they where going to use the answers from this thread as part of the research they are planning to do.

For sure. Your point is totally valid and you made me think. I was also just sharing what the other side of that perspective is.

 

[Crossbreed]

And there's one classification missing: people with "whatever kind of ND we all have in common" who have been completely ignored by the medical profession because we "get by" without needing any support, but are nonetheless profoundly affected by being ND.

IMO this is why the term "Aspie" (which doesn't match DSM 5) is still widely used. Many of us don't exactly have a "Disorder", but would benefit greatly from a little support from society.

That would be ASD1.
https://autlanders.blogspot.com/2019/07/autism-subtypes.html

 

[Jordy]

That would be ASD1.
https://autlanders.blogspot.com/2019/07/autism-subtypes.html

This is just a theory someone made up and put on their website, doesn't seem like there is any science backing it.

 

[Crossbreed]

This is just a theory someone made up and put on their website, doesn't seem like there is any science backing it.

*My* website is based on the views of Dr. Martha Herbert (via the US Autism Association).

 

[Hypnalis]

@Crossbreed

ASD1 is a "catchall", but includes the "D for Disorder".
The definition you linked might be better, but it seems to be a "low-level data thief" site, so I can't read enough of it.

When I looked at the actual DSM I saw nothing to convince me it's not a creation of medical people looking for illnesses to treat.

e.g. I've never had problems with language (spoken or written). But (limiting the discussion only to language) do have problems contextualizing based on the social situation. Of course this causes communication issues, but they're not failures in my ability to say what I want to say.
My skills with language mean that there's never been a point in my life where I would have been diagnosed as ASD1 unless (a) I wanted it (never, though early on that was die to ignorance), and (b) I knew how to "remove my mask" (learned somewhere between 25 and 35 years old).

My bottom line is that I don't like the "mental health centric" definition of ASD1, especially the "D for Disorder".
I don't think "ND" must imply "Disorder".

Hopefully this will change, because the original definitions of Asperger Syndrome has exactly the same problem.
IMO "Aspie" is currently "the lesser of two evils" rather than a good name.

(NB: @phantom's post was made between my starting and completing this one. It definitely scores points for clarity and brevity

 

[Crossbreed]

The definition you linked might be better, but it seems to be a "low-level data thief" site, so I can't read enough of it.

It is my neuro-diversity blog on Blogger.com. It should be safe.

 

[Jordy]

*My* website, based on the views of Dr. Martha Herbert (via the US Autism Association).

Dr. Martha Herbert offers a revolutionary new view of autism. Autism is not hardwired into a child’s genes and destined to remain fixed forever, as parents are often told. Instead, Dr. Herbert approaches autism as a collection of challenges, many of which can be tackled in a deliberate and methodical way

She trained in pediatrics at Cornell University Medical Center and in neurology and child neurology at Massachusetts General Hospital, where she has remained. She received the first Cure Autism Now Innovator Award and is on the Scientific Advisory Committee of Autism Speaks

In The Autism Revolution, I explain how a cascade of challenges can cause autism, and how addressing these challenges can make a profound difference in the condition, maybe even turning it around.

Sounds like quackery.

 

[Crossbreed]

Sounds like quackery.

Through Dr. Marlo Payne Thurman, the CEO of US Autism Assoc.,* I understand that Dr. Herbert believes ASD1 is hereditary and such are predisposed to the co-morbids of ASD2/3, which can be acquired later. The cure she speaks of (and I agree) is not for ASD1, but the said co-morbids.

All of the above parties believe that ASD1 is neuro-diversity, not requiring a cure.

*I was a consultant on her thesis (now book), Autism Is The Future.

 

[Jordy]

Through Dr. Marlo Payne Thurman, the CEO of US Autism Assoc.,* I understand that Dr. Herbert believes ASD1 is hereditary and such are predisposed to the co-morbids of ASD2/3, which can be acquired later. The cure she speaks of (and I agree) is not for ASD1, but the said co-morbids.

All of the above parties believe that ASD1 is neuro-diversity, not requiring a cure.

*I was a consultant on her thesis (now book), Autism Is The Future.

They claim that food, lifestyle etc can turn around asd2 and asd3 (into asd1 I guess?). Obviously that's not going to happen.

 

[ParticipatoryResearch101]

I get the impression that you don't know very much about autism. First, your logic is off. If you want to "finally give the voice to autistic people rather than NT's speaking for them," isn't what you're doing here just that? Sure, you'll survey several online populations and then select a number of quotes that seem to represent the voice of autistic people speaking for themselves--but the quotes will have been hand selected by you, a person clearly lacking in any wherewithal in what they're talking about. Second, and this explains the former claim & my topic sentence, is your use of the word 'recovery'. This isn't an addiction, you know. There is no prior plateau from which anyone here has fallen and needs to be saved. Go find out what I'm talking about and you'll do much better on that research paper of yours than you can presently do now.

You know, why don't you hang around for while and get to know some of these people? They don't bite. They're really a wonderful group of people. In fact, you probably have peers with whom you study at the university who are autistic. It might be to your advantage to befriend a few of them. The only catch is, you just have to figure out who they are--something you can't do until you know something more about what it is you're studying.



(BTW, I do bite. Because it sounds like you don't already know this, the focus on autism research is already predominantly male-oriented. This is why your research project sounds to me like you're taking the easy road out--there's a ton of research already out there upon which to draw. BUT, if you truly want to do research that makes a difference, then go for LGBTQ or women's or ethnic studies. It's harder to do that because there is less out there that has been written on it--but the payoff would be that much greater and would really make your research stand out. Otherwise, your OP sounds like you're after an easy grade. And why should we take that seriously? There are some phenomenally well-educated people on here, myself included, and we didn't achieve this by taking the easy way out.)

Hello, I have worked in the field of Autism for years, working in residential homes and special needs schools. I am merely on here to ask if this research were to be carried out, if this something that aligns with the community wishes (as research has shown one of the biggest wishes of the autistic community is to improve autistic services). Secondly, if I was to do this research, I would use a participatory design (having an autistic researcher on the team to direct the research and ensure that all resources used, and the process is autism friendly). Again, this is in align with community wishes "nothing about us without us".
Eating disorders are clearly defined, such as anorexia, bulimia, binge eating and disorder, if you wish to see the definitions for yourself. Male eating disorder research is practically non existent, with most study's including all women. I know there is a male bias in autism research which has led to biases in diagnosis and led to stereotypes and stigma. When I say recovery, I'm talking about recovery from a serious eating disorder not autism. I am also not suggesting autistic people need to "Eat better" or suggest a NT view upon them, this research is for people who have an eating disorder, a serious illness, not those whose eating habits don't fit in with the NT world view.

 

[ParticipatoryResearch101]

I am sorry for the irrational hostility towards autism researchers this forum seems to have, don't take it personally.

Thank you!

 

[Crossbreed]

Hello, I have worked in the field of Autism for years, working in residential homes and special needs schools.

[ASD]1s do not typically participate in those. Your experience is almost exclusively ASD2 & 3.

 

[ParticipatoryResearch101]

I have a lot of trouble eating properly, but this is to do with the sensory experience of eating. There is none of the defined mental disorder taking place. I don't know what to classify this under, but some assistance with that would be lovely as it's probably one of the major crippling facets of my life fully induced by autism.

Hello, firstly thank you for sharing. This sounds like sensory aversion maybe to taste or texture? I think the best way to classify this is in regard to hypERsensitivity and hypOsensitivity.

If its hypERsensitivity to taste/texture, this means heightened sensitivity.

If food tastes bland and you get minimal sensory input, then you may be hyposensitive in eating.

I hope this helps; I can send over research papers which show that you are not alone in this! There is a lot of people in the community that could related to you, I know this might not make it easier to deal with, but maybe they have found ways that helped them that could help you Hope this helps!

 

[ParticipatoryResearch101]

[ASD]1s do not typically participate in those. Your experience is almost exclusively ASD2 & 3.

Hello, thank you yes you are right. This is another thing that I hope can change so that research benefits the whole community! Great insight and thanks!

 

[Crossbreed]

They claim that food, lifestyle etc can turn around asd2 and asd3 (into asd1 I guess?). Obviously that's not going to happen.

I agree with the above, but that is not what Dr. Thurman passed on to me. Rather, that there is a recent, yet-to-be-determined environmental toxin that NTs are immune to which we are not. It permanently injures many ASD1s into 2s or 3s. It cannot be reversed by dietary adjustments.

Even the title of her book contradicts that. (She is a 2e expert in Colorado.)

 

[ParticipatoryResearch101]

This doesn’t seem quite true – lots of people openly engage with researchers here and offer deeply personal and valuable information.

You’re not entirely wrong either. For some of us, it’s not irrational to feel distrustful or even hostile – it is a threat to a community space where we have found safety. It is a stranger that we do not know who comes in and asks very detailed questions, and we have no idea in what way they will be used or the quality of the research being done here.

This research cannot be validated as it is based on anonymous answers… This researcher has no idea if we say we are who we are. I could answer as a male and they would have no idea whether or not I actually am one. The anonymity of an Internet forum does not support sound research.

It seems like we are easy pickings for people to come and study us.

This particular researcher seems very interested in people’s answers and rather respectful. Given time, many of us may begin to trust them. But, when presented as research, there are specific guidelines as to what constitutes valuable research. This feels like an attempt to get the “autistic perspective” from a few posts from a selected group that is willing to do so. My opinion is that all of this research should be presented as conversation, as we do here. The researchers should come here and engage in conversation, like we do. This is a place where gathering qualitative research can begin, but only the very start of it. It does appear that is what the researcher is attempting to do, if I give them the benefit of the doubt.

OP, you are a human too, and we would welcome you here, but I do not see your human side. I can see from your profile that you may be 24 and you are likely not autistic, we know nothing more. I see your name as “research” and a lot of smileys being used. These two things are anonymous to me, so it makes it harder for me to connect with the person who is behind this “research.”

For my part, it is something I’m working on because I do feel hostility, but I see the kindness and compassion from people that answer and so I’m trying to reconcile the two things. People like @Aspychata and @Stuttermabolur remind me to not judge and to have an open heart, but I find it understandable that some of us are fearful and have aversion toward researchers here.

OP, my words are not hollow when I say we welcome people. I was welcomed here as a stranger myself. Just stay hangout chat. You will learn so much about the depth and diversity of the autistic community the more time you spend here.

Anyone that has conducted ethical clinical research should know that this forum is not an appropriate place to gather objective data that can be analyzed as valid and reliable (the two measures of research validity).

I do apologize for my feelings of hostility, but not my distrust.

I completely understand your distrust, historically autism research has framed autism in an often hurtful way and has not served the autistic community well at all. Id like to note again here I am not collecting data here, your points regarding non ethical and non valid data being collected here is 100% correct, but I am merely seeking to find out the views of the community, as an individual rather than a "researcher". This is simply an opportunity for people to say if they think eating disorder research is important in autism research. And may also provide a discussion forum for those whom it affects. Once again I understand your views and indeed you distrust, I hope Ive helped clear this up a little bit!

 

[ParticipatoryResearch101]

It wouldn't be sound research, but they didn't say they where going to use the answers from this thread as part of the research they are planning to do. Whether or not they are going to do a proper honest research is completely out of our control anyway.

You are correct, I am not using the answers here for research this is just a discussion to inform me on the views of the community. I'd like to reassure you that I personally, would always use honest research but I again understand that others, particularly in the past have failed the community! Hence why the distrust shown on this discussion exists. Also thank you for your repeated kind words and understanding

 

[Crossbreed]

Hello, thank you yes you are right. This is another thing that I hope can change so that research benefits the whole community! Great insight and thanks!

If your poll of adults asks about having a guardian or representative payee/conservator, you can loosely sort their responses to ASD1, 2 or 3.