Research for eating disorders in autism

[ParticipatoryResearch101]

Hello everyone! (Trigger warning for discussion of eating disorders)

I am currently doing a Masters in autism research and have an assignment which is a research proposal on "Improving eating disorder treatments for autistic males". I wanted to consult with the autistic community before starting to ensure that my research topic aligns with the wishes of the autistic community. A quick background in case you are not familiar with the prevalence of eating disorders in autism: it is estimated that around 25% of people with eating disorders have autism (Huke et al., 2013). Currently autism specific treatments (that take into account sensory needs and more) have been lacking but it is slowly starting to be made (see PEACE program by Tchanturia). However, this treatment does not account for the sex differences in eating disorders, which research has shown does exist. Please see my questions below and feel free to answer one or all of them as well as ask questions and leave additional comments! Of course, treatments of men, women, trans and non-binary are equally as important, but men have been chosen as these things need to be tackled one population at a time.

1) Do you think this is an important research area for autism research?
2) Do you think health services in general do enough to accommodate to autistic people?
3) If you have received treatment for an eating disorder I would love to hear about your experience and thoughts about improvements needed (open to all genders).
4) Do you think men might need different treatment? (Such as taking into account a drive for muscularity rather than a drive for thinness as research has shown).

Thank you so much for taking the time to read this and I hope to hear from you!

 

[Atrapa Almas]

Hello and welcome. Self diagnosed male on the self diagnosed autist spectrum. There we go:

It is estimated that around 25% of people with eating disorders have autism

We would have to define whats an eating disorder. From an evolutive nutrition perspective almost all mankind eating habbits are just horrible. Thats why we go the dentist and we get fat, with diabetes and so many other health problems. From a zoologic perspective it makes no sense to give bread, cakes or chocolate to an ape. Even less recomended is to give them drugs like alcohol. And we are Apes. The Paleo diet is the closest and more scientific way to not have an eating disorder. So takking into account that almost all mankind eats wrongly,... Whats an eating disorder?

Let me guess, what could be a good scientific definition for an eating disorder... Mmm, lets active my NT thinking module. Yea! To eat diferently to what the majority does! To eat differently.

So if everybody eats pizza and burgers with lots cocacola and a cake that must not be an eating disorder even if they get health problems, but if they eat weirdly it must be a disorder even if they are healthy. Yeah, sound NT enougth. Let me shut off my NT thinking module to answer your questions autistically.

Argg, how stupid sounds those definitions of disorders now. Hope to be wrong and that you (science) actually have a good definition of them. Well, to the questions...

1) Do you think this is an important research area for autism research?

No.

2) Do you think health services in general do enough to accommodate to autistic people?

No.

3) If you have received treatment for an eating disorder I would love to hear about your experience and thoughts about improvements needed (open to all genders).

It would be an improvement to clearly define what is a healthy diet for a human being. It seems I must pay a nutriologist to get that basic knowledge and their recomendations are as variated and change so much that it seems more an art that science.

4) Do you think men might need different treatment? (Such as taking into account a drive for muscularity rather than a drive for thinness as research has shown).

I think some degree of muscularity (and sport activity) is important for a healthy life. Both for men and women. Why do you seem to think that its better for men than for women? Is there any evidence of that? Or its another "culture, majority of people like, no scientific stuff"?

Thank you so much for taking the time to read this and I hope to hear from you!

You are welcome.

 

[ParticipatoryResearch101]

Hello and welcome. Self diagnosed male on the self diagnosed autist spectrum. There we go:



We would have to define whats an eating disorder. From an evolutive nutrition perspective almost all mankind eating habbits are just horrible. Thats why we go the dentist and we get fat, with diabetes and so many other health problems. From a zoologic perspective it makes no sense to give bread, cakes or chocolate to an ape. Even less recomended is to give them drugs like alcohol. And we are Apes. The Paleo diet is the closest and more scientific way to not have an eating disorder. So takking into account that almost all mankind eats wrongly,... Whats an eating disorder?

Let me guess, what could be a good scientific definition for an eating disorder... Mmm, lets active my NT thinking module. Yea! To eat diferently to what the majority does! To eat differently.

So if everybody eats pizza and burgers with lots cocacola and a cake that must not be an eating disorder even if they get health problems, but if they eat weirdly it must be a disorder even if they are healthy. Yeah, sound NT enougth. Let me shut off my NT thinking module to answer your questions autistically.

Argg, how stupid sounds those definitions of disorders now. Hope to be wrong and that you (science) actually have a good definition of them. Well, to the questions...


No.

No.

It would be an improvement to clearly define what is a healthy diet for a human being. It seems I must pay a nutriologist to get that basic knowledge and their recomendations are as variated and change so much that it seems more an art that science.

I think some degree of muscularity (and sport activity) is important for a healthy life. Both for men and women. Why do you seem to think that its better for men than for women? Is there any evidence of that? Or its another "culture, majority of people like, no scientific stuff"?

You are welcome.

Firstly, thank you for your detailed reply. Secondly, I hope to clarify some things and answer your questions.
In response to what you said about human eating being bad in general, whilst I agree I think it may be helpful here to distinguish between an eating disorder and what you might say is disordered (bad) eating.
Disordered eating would be things such as general poor human eating habits, including general bad diets, eating at unhealthy times, having too much sugar etc. Basically, what you brilliantly described in your opening few paragraphs.

Eating disorders, however, are psychological illnesses characterized by a control of food to deal with emotions, such as starving yourself, which are often accompanied, but not always, with a desire to be thin. These people can often display other poor health behaviours in relation to food such as self-induced vomiting, excessive exercise and so on. To exemplify the severity of these disorders, compared to disordered eating discussed prior, I'll tell you about Anorexia (a type of eating disorder where the sufferer has a very low BMI, and a distorted view of their body shape, thinking they are fat when they are actually very underweight). Anorexia is the deadliest mental illness (Harris and Barraclough, 1998). And half of people never fully recover (Keel and Brown, 2010).

To answer your question about muscularity, I agree that healthy men and women should have some muscle and sport activity, but what I meant is that when asking men and women with eating disorders, their motivation for continuing to have an eating disorder, women will often say they want to be thinner, whereas men say they want to look more muscular (such as being able to see their abdominal muscles for example).

Thanks again! I hope this helps answer your questions and that you find it interesting

 

[Atrapa Almas]

If you are looking for those you should be targeting trauma.

Many autists develop trauma, because being different enougth is almost a guarantee to suffer discrimination. But also people of different race do suffer trauma, also people who are very uggly or very handsome. Also people who have a very different religion.

So when those very different discriminated people do want to merge back with the society that rejected them, they may want to do it by the masking-apperance route.

Others develop those esting disorders you mention as a way to get some control back on their lifes. So trauma, bullying, anxiety and masking are some things that co-occur with those eating "symtoms". Those are not the problem itself but how you dettect it.

If you could magically give self love and confidence to people with anorexia, anorexia would magically be "cured". But any person who mask in order to be accepted knows that they are not good enougth as they truly are, so they enter into this personal quest to be "perfect" because they are not good enougth like they actually are. The eating problem is just the tip of the iceberg.

Some will die due to health damage derived from the lack of nutrients. ¿How many will suicide? Do they suicide for a lack of nutrients or because the distorted self concept. That distorted self concept comes from a lack or nutrients or from trauma?

The only autists related esting "disorder" that I know is esting the same thing over and over again, and its more a "fixation" with routined. We would have to define fixation, because that description is done from NT perspective on that "eating the same things over and over is weird, thus must be bad, thus we use fixation word instead of passion."

So to sum up, I dont think autism by itself provokes the eating disorders you mention, but trauma.

There is a very strong autism-trauma relation, but you may be loosing the root cause by focusing on autism.

Nice answer, by the way.

Let me share with you some quotes from "Trauma and recovery" book:

Quote1:

Quote2:

Quote3:

Quote4:

Now, about the coocurrence of Autism and Trauma: Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions - PubMed

 

[Alexej]

1) Do you think this is an important research area for autism research?

it might be - but as a 68 year old it is not what is most pressing for me

2) Do you think health services in general do enough to accommodate to autistic people?

no - so far I have not seen much accommodation

3) If you have received treatment for an eating disorder I would love to hear about your experience and thoughts about improvements needed (open to all genders).

not applicable

4) Do you think men might need different treatment? (Such as taking into account a drive for muscularity rather than a drive for thinness as research has shown).

yes I expect that there will be differences in the approach needed, but the end might be the same

 

[ParticipatoryResearch101]

If you are looking for those you should be targeting trauma.

Many autists develop trauma, because being different enougth is almost a guarantee to suffer discrimination. But also people of different race do suffer trauma, also people who are very uggly or very handsome. Also people who have a very different religion.

So when those very different discriminated people do want to merge back with the society that rejected them, they may want to do it by the masking-apperance route.

Others develop those esting disorders you mention as a way to get some control back on their lifes. So trauma, bullying, anxiety and masking are some things that co-occur with those eating "symtoms". Those are not the problem itself but how you dettect it.

If you could magically give self love and confidence to people with anorexia, anorexia would magically be "cured". But any person who mask in order to be accepted knows that they are not good enougth as they truly are, so they enter into this personal quest to be "perfect" because they are not good enougth like they actually are. The eating problem is just the tip of the iceberg.

Some will die due to health damage derived from the lack of nutrients. ¿How many will suicide? Do they suicide for a lack of nutrients or because the distorted self concept. That distorted self concept comes from a lack or nutrients or from trauma?

The only autists related esting "disorder" that I know is esting the same thing over and over again, and its more a "fixation" with routined. We would have to define fixation, because that description is done from NT perspective on that "eating the same things over and over is weird, thus must be bad, thus we use fixation word instead of passion."

So to sum up, I dont think autism by itself provokes the eating disorders you mention, but trauma.

There is a very strong autism-trauma relation, but you may be loosing the root cause by focusing on autism.

Nice answer, by the way.

Let me share with you some quotes from "Trauma and recovery" book:

Quote1:
View attachment 88763

Quote2:
View attachment 88764

Quote3:
View attachment 88765

Quote4:
View attachment 88766

Now, about the coocurrence of Autism and Trauma: Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions - PubMed

Lovely thank you again for these great insights! I will definitely look at incorporating trauma into the interview process and including questions on it. I hope you have a lovely day and my sincere best wishes

 

[ParticipatoryResearch101]

it might be - but as a 68 year old it is not what is most pressing for me

no - so far I have not seen much accommodation

not applicable

yes I expect that there will be differences in the approach needed, but the end might be the same

Thank you so much this is really helpful! I would also like to add that I know there has been a significant lack of research on autistic adults above a certain age and I understand this is a concern that should be addressed immediately. There is some great work being done, such as that by DR. Amanda Roestorf, but as whole research in this field is very new. Have a great day and thank you again sincerely for sharing your thoughts.

 

[PastelPetals]

1) Do you think this is an important research area for autism research? Yes of course. The overlap between autism and mental illness is well known but disorders that tie into our innate way of thinking (Eating disorders and ocd are both good examples) are often not treated and excused as "just autism" or treated from an NT point of view.
2) Do you think health services in general do enough to accommodate to autistic people? No not at all. Often things that are harmless to me are pathologized and I often don't have accommodations that I need to access health care. (such as sensory accommodations and communication accommodations).
3) If you have received treatment for an eating disorder I would love to hear about your experience and thoughts about improvements needed (open to all genders). Honestly I don't think most ED treatment works for NT let alone autistics. The force, threats, tons of rules etc make it hard for NT's to access treatment even those who want to recover. If you add on the fact that this person may be a picky eater to begin with and have sensory sensitivities, trauma, rigid thinking etc you need a more gentle approach that I don't see much if ever. I don't know many people who have not relapsed and many I know do it right after treatment is over considering compliance is often prized not genuine healing. Even though we know that ED's are not all just rich white teenage girls who want to look good for prom I think that mentality does still linger. I have had the hardest time explaining to professionals that I don't have body dysmorphia or think I am fat I don't hate my body either and yet I do want to keep losing weight. From an autistic perspective the routine and numbers comfort me the emotional regulation that it provides the feeling of some sort of control (the amount of times I have been told that you can only control yourself not the world around me probably prompted this one) and yes people are nicer to you if you're skinny. If people think you are hot they will excuses a lot of awkwardness and skinny = hot to a lot of people. Not me but I have to play the game and i have to leverage what i've got because i don't have much. Add that to a feeling of accomplishment and "winning" when everything else in my life is sort of stagnant you have an ED without bad body image. The amount of times I have been pressured by professionals to admit that I think i'm fat or I hate what I see when I look at myself is way too many. Yes I want to loose yes I panic when I gain but I look at the scale like somebody who is really invested in the stock market. Like yes I want the "good" number and I am going to devote a lot of time to strategies to get the "good" number but the morality of food and weight is just as socially constructed as money but I have my life savings invested and if I sell and cash out now who knows the market could get a lot better really soon or I could loose a ton of money so I feel like I can't go back now. Even the times when I have sold my stocks whenever money got a little tight I would think of my busy life trading stocks. Yes I was working 100 hours a week and the stress was making my hair fall out but I didn't have to worry about money. (tried to make the metaphor work not sure if it did)
4) Do you think men might need different treatment? (Such as taking into account a drive for muscularity rather than a drive for thinness as research has shown). Yes and no there has been a rise for both men and women recently to bulk up including many girls I know who had restrictive eating disorders. There is not enough awareness of orthorexia and obsessive macro counting but due to the rise of the skinny stater boy trend I am seeing more ana guys these days. (and again the main assumption is that every person in ED treatment does this mostly or purely for aesthetic reasons which is false)Really the way we treat boys does not have to be different but we think it has to be because we treat all girls like they just wanted to look good for the prom or like ballet and got carried away it's a bias even when places claim to be trauma informed. And yes I have a gymnast friend and i have a "boyfriend made too many mean comments" friend but I also have a parent died friend, and an ocd friend, and an a T1D friend, and a started clean eating and doing yoga but "now I worry everything has "unclean" ingredients" friend. I have friends that were bullied for being "too fat" or even put on diets as a child by their mothers, I have friends who wanted to fit into the clothes there friends were wearing, friends who got there father genes while their mothers made side comments about how thin their siblings were who got the mom's genes and so many more and never did I mention gender. Boys and men with eating disorders are not treated well because we don't see them as having them. Simple as that there is so much bias that needs to be corrected. Ed's are also often seen as a loss of control or even a weakness and that eating enough carb exchanges is gonna fix and men are not supposed to be weak so I think that leads to under reporting same as any other mental illness.


I didn't even address trying to get help when not underweight, how treatment gives people new food rules that feed into disorder after treatment, how non toxic but non recovery focused ED support has helped people i know recover even though a lot of that is seen as bad, how skinny is kind of coming back into vogue so I think eating disorders are back on the rise. etc etc etc I have many thoughts because I think even educated professionals often overlook some or many or all of the points I have made. There is still a long way to go before I see treatment as a viable option.

 

[ParticipatoryResearch101]

1) Do you think this is an important research area for autism research? Yes of course. The overlap between autism and mental illness is well known but disorders that tie into our innate way of thinking (Eating disorders and ocd are both good examples) are often not treated and excused as "just autism" or treated from an NT point of view.
2) Do you think health services in general do enough to accommodate to autistic people? No not at all. Often things that are harmless to me are pathologized and I often don't have accommodations that I need to access health care. (such as sensory accommodations and communication accommodations).
3) If you have received treatment for an eating disorder I would love to hear about your experience and thoughts about improvements needed (open to all genders). Honestly I don't think most ED treatment works for NT let alone autistics. The force, threats, tons of rules etc make it hard for NT's to access treatment even those who want to recover. If you add on the fact that this person may be a picky eater to begin with and have sensory sensitivities, trauma, rigid thinking etc you need a more gentle approach that I don't see much if ever. I don't know many people who have not relapsed and many I know do it right after treatment is over considering compliance is often prized not genuine healing. Even though we know that ED's are not all just rich white teenage girls who want to look good for prom I think that mentality does still linger. I have had the hardest time explaining to professionals that I don't have body dysmorphia or think I am fat I don't hate my body either and yet I do want to keep losing weight. From an autistic perspective the routine and numbers comfort me the emotional regulation that it provides the feeling of some sort of control (the amount of times I have been told that you can only control yourself not the world around me probably prompted this one) and yes people are nicer to you if you're skinny. If people think you are hot they will excuses a lot of awkwardness and skinny = hot to a lot of people. Not me but I have to play the game and i have to leverage what i've got because i don't have much. Add that to a feeling of accomplishment and "winning" when everything else in my life is sort of stagnant you have an ED without bad body image. The amount of times I have been pressured by professionals to admit that I think i'm fat or I hate what I see when I look at myself is way too many. Yes I want to loose yes I panic when I gain but I look at the scale like somebody who is really invested in the stock market. Like yes I want the "good" number and I am going to devote a lot of time to strategies to get the "good" number but the morality of food and weight is just as socially constructed as money but I have my life savings invested and if I sell and cash out now who knows the market could get a lot better really soon or I could loose a ton of money so I feel like I can't go back now. Even the times when I have sold my stocks whenever money got a little tight I would think of my busy life trading stocks. Yes I was working 100 hours a week and the stress was making my hair fall out but I didn't have to worry about money. (tried to make the metaphor work not sure if it did)
4) Do you think men might need different treatment? (Such as taking into account a drive for muscularity rather than a drive for thinness as research has shown). Yes and no there has been a rise for both men and women recently to bulk up including many girls I know who had restrictive eating disorders. There is not enough awareness of orthorexia and obsessive macro counting but due to the rise of the skinny stater boy trend I am seeing more ana guys these days. (and again the main assumption is that every person in ED treatment does this mostly or purely for aesthetic reasons which is false)Really the way we treat boys does not have to be different but we think it has to be because we treat all girls like they just wanted to look good for the prom or like ballet and got carried away it's a bias even when places claim to be trauma informed. And yes I have a gymnast friend and i have a "boyfriend made too many mean comments" friend but I also have a parent died friend, and an ocd friend, and an a T1D friend, and a started clean eating and doing yoga but "now I worry everything has "unclean" ingredients" friend. I have friends that were bullied for being "too fat" or even put on diets as a child by their mothers, I have friends who wanted to fit into the clothes there friends were wearing, friends who got there father genes while their mothers made side comments about how thin their siblings were who got the mom's genes and so many more and never did I mention gender. Boys and men with eating disorders are not treated well because we don't see them as having them. Simple as that there is so much bias that needs to be corrected. Ed's are also often seen as a loss of control or even a weakness and that eating enough carb exchanges is gonna fix and men are not supposed to be weak so I think that leads to under reporting same as any other mental illness.


I didn't even address trying to get help when not underweight, how treatment gives people new food rules that feed into disorder after treatment, how non toxic but non recovery focused ED support has helped people i know recover even though a lot of that is seen as bad, how skinny is kind of coming back into vogue so I think eating disorders are back on the rise. etc etc etc I have many thoughts because I think even educated professionals often overlook some or many or all of the points I have made. There is still a long way to go before I see treatment as a viable option.

Hello, firstly thank you for your truly valuable insight and secondly for sharing your experiences with me, it is truly appreciated. I absolutely agree with all that you have said! My interest in the subject stems from wanting eating disorder treatments to improve significantly because we are failing many, many people. I also am passionate about health care in general becoming autism inclusive and adopting the sensory and communicative accommodations you mentioned prior. Your points regarding professionals only seeing things from an NT point of view is unfortunately 100% accurate, I hope that the rise of participatory research will soon irradicate this problem and finally give the voice to autistic people rather than NT's speaking for them. Honestly thank you so so much. I wish you all the best and hope you find an option that helps you on your road to recovery. My very best wishes!

 

[GypsyMoth]

You know, calling this a "trigger warning for discussion of eating disorders" is weird and oddly self-serving. To clarify, saying 'don't think about the elephant in the room' makes you think of--you got it. (Need I say anything more?) Therefore, including this in the title works as its own advertisement, because now we want to see the elephant in the room. But I am only speaking for myself here. Along a similar vein, might as well label every commercial with a trigger warning, or have every police officer begin with the preamble that running a red light will result in a ticket. Let's face it: causes have consequences and there is such a thing as an objective reality.


I am not answering as an autistic, just offering an observation. Dysfunctional eating habits in autism may be tied in part to stimming behavior. Address the cause behind the increased need to stim and address the dysfunctional eating habit. Two birds with one stone.

(Granted, of course as @Atrapa Almas has already so succinctly said, however we define 'eating disorder' naturally directs the questions we ask about it and how we approach resolving those questions asked. Do be sure to define your terms clearly in your research.)

 

[GypsyMoth]

...Your points regarding professionals only seeing things from an NT point of view is unfortunately 100% accurate, I hope that the rise of participatory research will soon irradicate this problem and finally give the voice to autistic people rather than NT's speaking for them. Honestly thank you so so much. I wish you all the best and hope you find an option that helps you on your road to recovery. My very best wishes!

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.)

 

[Aspychata]

Answer 1.
Any area studied re: autism is needed. Do our restrictive diets need to be part of the approach for helping autistic people navigate their daily life might be more of the bigger picture.

Answer 2.
Do I think the health system adequately treats or helps accommodate those that identify with being autistic? There seems to be too much divergence on access to be tested, to be accommodated, and to receive therapeutic support as needed. So again, question 2 is too general, and the term accommodate is too broad a word for me to address.

Answer 3
I haven't been treated for eating disorders. But l am sure l have cycled through repetitive choices in regards to my personal diet. But there are people who aren't autistic and eat nothing but frozen overly processed food and nobody gets on their case about their diet or tells them they are suffering from a "fixation." Their food choices aren't any better than mine. This isn't a hostile answer, it's just a factual observation.

Answer 4
I am not male, so l don't feel qualified to answer this.

 

[Jordy]

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

 

[Jordy]

I think pretty big part of unhealthy eating habits in autism stems from executive function problems. For instance, someone with autism may struggle so much with getting all their daily tasks done that they will literally forget to eat regularly.

 

[Knower of nothing]

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.

 

[Jordy]

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.

I don't have it this bad, but I do prefer very soft and pasty foods over anything else. Pancakes, chicken nuggets, vla, cake, mashed potatoes etc. They aren't as sensory stimulating.

 

[Crossbreed]

@ParticipatoryResearch101, I think that you first need to determine if that problem is spectrum-wide. Does it occur equally across all severity levels, or is it a severe co-morbid condition that ASD2s & 3s are known for?

Here is a rough method of determining one's severity level, if not known officially,

1. ASD3 is enrolled in special education as a child and has a guardian (of person) as an adult;
2. ASD2, special ed. & some kind of financial conservator, but no guardianship;
3. ASD1 might have a 504 plan (no special ed.) and neither guardian nor conservator as an adult.

 

[Knower of nothing]

I don't have it this bad, but I do prefer very soft and pasty foods over anything else. Pancakes, chicken nuggets, vla, cake, mashed potatoes etc. They aren't as sensory stimulating.

I wish I had a pattern like that. It seems I "bonded" with some foods I learned to like as a kid (though my taste for some did still fall away with time) and there hasn't been anything new since. Not for lack of trying sadly. There's a lot of food in the tolerable category which means I could survive on them, but it'd take up more energy and losing some of the precious little energy I have on not starving feels really bad. It's an aspect of my life I don't want to have to think about if I can help it.

 

[Hypnalis]

@ParticipatoryResearch101

This is a partial reply only to your point 2:
"2) Do you think health services in general do enough to accommodate to autistic people?"

As @Crossbreed reminded you two posts above, there are different classifications within ASD.

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.

We can't teach the other 99.3% (est) of the population (NTs) how to understand us, and they don't teach us at the right time (pre-adult) to to get along with them. The "rule of thumb" is that, as a group, we start figuring things out for ourselves at around 25, and will die of old age still working on things that NT's get naturally at the same time as they learn their first language.

Also, if I'm anything to go by, there are plenty of us who will never be diagnosed. If "ASD + this group" is a related set of humans with a (more or less) continuous range of symptoms/effects of this kind of ND, it would be at least "the other 0.3%" - i.e. the full group is probably at least 1% of humanity.

Adjust again for the weird (and unexplained) difference in diagnosed M's vs F's and our kind of ND of ND is probably more like 1.5% in total. (because that difference is probably a side-effect of different patterns of socialization between M's and F's rather than genetics).

And given that the better we mask the less likely we are to get any attention (an unfortunate "Catch 22" of learning to get by with absolutely zero support), I'd expect the "Aspie" part of that would be quite high (45% +/- 10 (i.e. in the range 35-55%)).

Given that we're "divergent" but not delinquent, I'd expect some "socialization and communication" support for us would be very cost effective compared to most other groups for which there's reasonably effective mitigation treatment.

We're ignored because we don't cause trouble. But our lives would be better, and we'd contribute more to society (for example as net contributors rather than +/- 0 participants between our early 20's and early 30s+) with a small amount of support. (Just getting 5 person years each back would pay for a lot of support)

IMO researchers and the medical profession should also be looking for us, and looking for ways to help us.

BTW I'm by no means the only person in this category who posts here. So far nobody like you has come looking for us (at least in the last 12 months).

 

[Rodafina]

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

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.