Systematized advice and self-help books

[vergil96]

A post in another thread inspired me a bit that I feel like I have just been left alone without any even basic information delivered in a systematic manner about autism. For example, there are plenty of self-help guides about ADHD, and I have one good guide and there are plenty to choose from. I haven't found anything similar about autism. I feel like I'm in the dark to a large extent. The only things I've found are about explaining the "weird" behaviour of people on the autism spectrum to neurotypical people or perhaps people on the spectrum who don't understand their own behaviour. The other kind of self-help books is about social issues - that I do not have. There is another kind of content that is about validation, which also isn't for me. Do you know any self-help books that can explain how to actually make life easier and prevent health issues such as not eating? That would actually be helpful for someone on the spectrum who struggles with practical issues, not social issues?

 

[Fino]

Can you please provide a comprehensive list of which issues specifically that you would like discussed, in addition to the ones you've already provided? I am an author of self-help books and will consider writing this one.

 

[Au Naturel]

basic information delivered in a systematic manner about autism

I'm not sure that exists. Given that every autistic person presents a bit differently, it may not be possible that such a guide can exist.

Autism in current thinking ranges from barely notable to so severe as to preclude life without extensive support. I note my symptoms are far less pronounced than other people's which makes it difficult for me to talk about more severe cases.

There is no general principle governing autism. There are only symptoms, so it is considered a syndrome, not a sharply defined condition. Genetically, there are probably a bunch of different genes governing it, and perhaps different combinations cause it to present differently. Then you add epigenetic factors, in-utero factors, and possibly even post-natal factors that interact with those genes.

There are diagnostic criteria found in the DSM-V:

Diagnostic Criteria | Autism Spectrum Disorder (ASD) | NCBDDD | CDC

Learn about the standardized criteria used to help diagnose autism spectrum disorder (ASD).

www.cdc.gov

Tackling each symptom as it arises is probably the best approach.

 

[grommet]

A post in another thread inspired me a bit that I feel like I have just been left alone without any even basic information delivered in a systematic manner about autism. For example, there are plenty of self-help guides about ADHD, and I have one good guide and there are plenty to choose from. I haven't found anything similar about autism. I feel like I'm in the dark to a large extent. The only things I've found are about explaining the "weird" behaviour of people on the autism spectrum to neurotypical people or perhaps people on the spectrum who don't understand their own behaviour. The other kind of self-help books is about social issues - that I do not have. There is another kind of content that is about validation, which also isn't for me. Do you know any self-help books that can explain how to actually make life easier and prevent health issues such as not eating? That would actually be helpful for someone on the spectrum who struggles with practical issues, not social issues?

Life skills are one of my biggest problems and I always wanted books about them. I am sorry I am responding but not able to answer your question.

It is not what you are asking but the people here on Aspie Central have helped me many times with big life skills problems. People seem to know a lot of things I do not. The help has changed my life. Maybe if you asked about something, someone here would help.

 

[vergil96]

Thank you for your replies

Can you please provide a comprehensive list of which issues specifically that you would like discussed, in addition to the ones you've already provided? I am an author of self-help books and will consider writing this one.

Part of my problem is that I don't know what my issues exactly are. Problems I have had during last year are:
- adaptation disorder leading to executive dysfunction
- sensory overload leading to panic attacks and executive dysfunction.
- forgetting to eat and drink due to an irregular schedule, I have organizational problems that I have always attributed to ADHD and if one thing changes in my day, the rest falls apart like dominos, because when I do one thing, I forget about the rest or what I have to do next and then everything piles up like hunger reaches alarming levels, I need to go to the toilet *NOW*, mess makes it impossible to do things and I have to clean *NOW* and as a result I'm late and stressed out and forget about crucial things like food and drinking water. Routine helps with that, however, I don't know how I can have a routine when I'm forced out of it e.g. by an irregular schedule

I also don't know how to avoid sensory overload when I'm forced to participate in activities and can't opt out e.g. classes and can't take a sick leave. I also can't take a sick leave for migraines and I don't know what I'm supposed to be doing. I have hypoglycemia and low blood pressure and I can't eat and drink just once or twice a day, but it's rude to do it in class and I'll run into problems and I can't do it while driving either. These are fairly normal needs, but my ADHD (or whatever it is) makes it impossible to find time for them, I end up rushed and super stressed out and that inhibits hunger as well. I end up stressed out, because I don't deal with my ADHD well. The guides have helped somewhat, but most of the advice focuses on self-discipline and reinforcement , and it just stresses me out and makes things worse, because I'm more forgetful and agitated when stressed, it's not about having a problem forming habits itself, I can't form habits, because many things make it impossible to follow them such as the urgent physiological needs. I'm trying to follow a routine with e.g. eating and drinking and going o the toilet at regular times and it's getting better, but it won't work if e.g. I plan lunch at 2 pm and I suddenly have to be somewhere at 2 pm, then I'm hungry like I'm about to die, shake, can't think during this activity, but I can't change the hour or opt out, and everyone is like "just deal with it". But I can't just deal with it. The advice I'm being given is unhelpful and I don't even know how to "just do things" it's like I was given parts of a car not assembled and told to "just drive, it's easy". I'm telling what it looks like for me, but I get the same advice such as just follow a routine, when I can't always make it happen. Or another thing is "just get up earlier", but I don't function without enough sleep and I often can't fall asleep. Lots of things make me unable to fall asleep that I can't control such as emotional reasons and being forced to participate in too many activities or too late, or feeling restless and having to go for a walk at 9 pm. It would be ideal for me if I had good health, but I don't always have good health and can't do sport everyday, including riding the stationary bike, and when I don't I'm restless. I always get told I'm overcomplicating, but I'm not, it's ADHD that makes daily functioning "level hard", because it adds many additional factors to account for and makes me hyperfocus and forget about everything else other than the current activity.

 

[vergil96]

I'm not sure that exists. Given that every autistic person presents a bit differently, it may not be possible that such a guide can exist.

Yes, but there is a certain range of characteristics and problems. Just like with everything else, no two people with any condition have exactly the same symptoms and treatment. In the case of all conditions there is a range of symptoms,problems, and treatments - including lifestyle modifications.

I also don't think ASD-3 is all that different from higher functioning labels. I have two cousins with severe autism. The difference is comorbidities. I can't speak when I'm tired, for example. Same things are hard and same are easy, the cousins just got less lucky with spare brain power to do the hard things such as speaking and comprehending speech (a hearing deficit runs in my family and I can't always understand speech even in good circumstances either). But - why do things the hard way if it's unneeded? This is why I think some shouldn't be denied help, because "they can do it" or "they can understand" (personal experience). I think that if something is important, you should try to put in the most effort you can, but if you can e.g. clean the hard way or the easy way, why waste time and energy on perfect floor cleaning? Also that someone "understands" doesn't mean it's easy for them to actually do the thing, intellectual understanding is veyr different from being able to do something. It's not directed at you specifically, it's just an angry rant, I'm angry at the whole issue.

 

[AuroraBorealis]

Unrelated to the self-help book thing, but taking up some things you mentioned:

Does your school/university have someone who deals with students with special needs? Maybe you could write down the specific problems you have in school, and someone could try to help you find solutions for them. For example the food thing: I know that it's generally not allowed/not regularly accepted to eat in class. But there are people with health conditions, like diabetes, who just need to. One could argue whether autism/ADHD is "reason enough" to allow it, but personally, I don't see why not. Could you talk to someone at your school and get a certificate or something, allowing you to have a (quiet) snack in class? At least at my school, the professors were generally nice, too. If you asked them before class if you could quietly have a snack because you didn't have time to eat lunch, many would allow it. That might at least take some of the food pressure off you, because you knew that, normally, you could always have lunch at this hour, no matter whether you have a class then or not.
And maybe also someone at your school, like a tutor, could help you with your schedule, trying to make it as consistent as possible with as little last minute changes as possible?
Those are just thoughts. A lot of schools have advisors for students with special needs.

I would also like such a self-help book. My issues are also others than social ones. I struggle with sensory overload, anxiety from changes, trouble self-organizing and with executive dysfunction, quickly burning out from sensory stimuli and from masking - it seems, not all that different to your issues. Let me know if you find something.

 

[Fino]

Thank you for your replies


Part of my problem is that I don't know what my issues exactly are. Problems I have had during last year are:
- adaptation disorder leading to executive dysfunction
- sensory overload leading to panic attacks and executive dysfunction.
- forgetting to eat and drink due to an irregular schedule, I have organizational problems that I have always attributed to ADHD and if one thing changes in my day, the rest falls apart like dominos, because when I do one thing, I forget about the rest or what I have to do next and then everything piles up like hunger reaches alarming levels, I need to go to the toilet *NOW*, mess makes it impossible to do things and I have to clean *NOW* and as a result I'm late and stressed out and forget about crucial things like food and drinking water. Routine helps with that, however, I don't know how I can have a routine when I'm forced out of it e.g. by an irregular schedule

I also don't know how to avoid sensory overload when I'm forced to participate in activities and can't opt out e.g. classes and can't take a sick leave. I also can't take a sick leave for migraines and I don't know what I'm supposed to be doing. I have hypoglycemia and low blood pressure and I can't eat and drink just once or twice a day, but it's rude to do it in class and I'll run into problems and I can't do it while driving either. These are fairly normal needs, but my ADHD (or whatever it is) makes it impossible to find time for them, I end up rushed and super stressed out and that inhibits hunger as well. I end up stressed out, because I don't deal with my ADHD well. The guides have helped somewhat, but most of the advice focuses on self-discipline and reinforcement , and it just stresses me out and makes things worse, because I'm more forgetful and agitated when stressed, it's not about having a problem forming habits itself, I can't form habits, because many things make it impossible to follow them such as the urgent physiological needs. I'm trying to follow a routine with e.g. eating and drinking and going o the toilet at regular times and it's getting better, but it won't work if e.g. I plan lunch at 2 pm and I suddenly have to be somewhere at 2 pm, then I'm hungry like I'm about to die, shake, can't think during this activity, but I can't change the hour or opt out, and everyone is like "just deal with it". But I can't just deal with it. The advice I'm being given is unhelpful and I don't even know how to "just do things" it's like I was given parts of a car not assembled and told to "just drive, it's easy". I'm telling what it looks like for me, but I get the same advice such as just follow a routine, when I can't always make it happen. Or another thing is "just get up earlier", but I don't function without enough sleep and I often can't fall asleep. Lots of things make me unable to fall asleep that I can't control such as emotional reasons and being forced to participate in too many activities or too late, or feeling restless and having to go for a walk at 9 pm. It would be ideal for me if I had good health, but I don't always have good health and can't do sport everyday, including riding the stationary bike, and when I don't I'm restless. I always get told I'm overcomplicating, but I'm not, it's ADHD that makes daily functioning "level hard", because it adds many additional factors to account for and makes me hyperfocus and forget about everything else other than the current activity.

Are you opposed to medication?

 

[vergil96]

Does your school/university have someone who deals with students with special needs?

I talked about it on the forum previously. There is the deanery that deals with administrative issues. They are approachable, however, without a clear understanding of my problems, they won't be able to help. There is nobody who deals with health issues or special needs specifically. There are also no tutors. I also don't have a formal diagnosis, and I would rather avoid it. However, I have doctors who are helpful and who could write a notice, but I have to know what I need, and I don't know that. I also don't know what I would need or have to say at the deanery, which is a crucial step obtaining help.

I could try to obtain a notice about hypoglycemia, but I don't know how seriously it will be treated, because it' not diabetes. Also, maybe if what I need is eating during class, I don't need a doctor's notice? I'm thinking aloud right now. It's a good idea to try to approach the lecturers and teachers about the food, it's a good idea, thank you It didn't cross my mind at first and I probably needlessly feel like I'm disturbing and annoying everyone when it's not neccesarily true.

About the schedule, we can choose hours of classes that take place at a few different times, but many classes don't, and that's the problem, because during the undergraduate degree, I tweaked the hours all the time to better suit me, just like many other students. Now there is no choice and practically a different time would require the teacher to come for an additional hour or two for just one student and I would rather avoid making requests that are hard for the university to accomodate. Perhaps doing tasks at home could be a solution? It used to be possible in some classes, but not all. Again, I'm thinking aloud.

I wonder if I'm missing something if so many people say there are disability advisors at universities.

Are you opposed to medication?

Yes, I am, I don't tolerate psychiatric medications well.

Stimulants tend to suppress apetite and interoception BTW. I have poor interoception. And cause sleep problems. I have these issues even with coffee. And without any substances. Perhaps ADHD isn't the root of the problem? I do have many symptoms such as hyperfocus and being unable to focus, fidgeting, restlessness, careless mistakes, daydreaming, losing things, forgetting constantly. I don't know if it's the root of the problem, though, because half of the coping methods don't help and people diagnosed with ADHD report certain stimuli as distracting, while for me they are alarming in intensity such as sounds. What helps me is putting things in the same place, preparing on the previous day, writing lists, splitting tasks into smaller parts and taking breaks. Generally organizing my environment so that it's hard to lose or forget something. Staying organized helps a lot. Also I find stimming helpful such as listening to music while studying and generally - to not fight the fidgeting. My therapist said that forgetting to eat is ADHD when I asked him. Maybe I should go ask someone else, but I get lost in what exactly the problem is. There are many problems, everything goes wrong.

But writing it down and hearing feedback helps a bit, perhaps I should go in the direction of:
- hypoglycemia, regular meals
- fixing the schedule

I'm just thinking out loud...

 

[Fino]

I talked about it on the forum previously. There is the deanery that deals with administrative issues. They are approachable, however, without a clear understanding of my problems, they won't be able to help. There is nobody who deals with health issues or special needs specifically. There are also no tutors. I also don't have a formal diagnosis, and I would rather avoid it. However, I have doctors who are helpful and who could write a notice, but I have to know what I need, and I don't know that. I also don't know what I would need or have to say at the deanery, which is a crucial step obtaining help.

I could try to obtain a notice about hypoglycemia, but I don't know how seriously it will be treated, because it' not diabetes. Also, maybe if what I need is eating during class, I don't need a doctor's notice? I'm thinking aloud right now. It's a good idea to try to approach the lecturers and teachers about the food, it's a good idea, thank you It didn't cross my mind at first and I probably needlessly feel like I'm disturbing and annoying everyone when it's not neccesarily true.

About the schedule, we can choose hours of classes that take place at a few different times, but many classes don't, and that's the problem, because during the undergraduate degree, I tweaked the hours all the time to better suit me, just like many other students. Now there is no choice and practically a different time would require the teacher to come for an additional hour or two for just one student and I would rather avoid making requests that are hard for the university to accomodate. Perhaps doing tasks at home could be a solution? It used to be possible in some classes, but not all. Again, I'm thinking aloud.

I wonder if I'm missing something if so many people say there are disability advisors at universities.


Yes, I am, I don't tolerate psychiatric medications well.

Stimulants tend to suppress apetite and interoception BTW. I have poor interoception. And cause sleep problems. I have these issues even with coffee. And without any substances. Perhaps ADHD isn't the root of the problem? I do have many symptoms such as hyperfocus and being unable to focus, fidgeting, restlessness, careless mistakes, daydreaming, losing things, forgetting constantly. I don't know if it's the root of the problem, though, because half of the coping methods don't help and people diagnosed with ADHD report certain stimuli as distracting, while for me they are alarming in intensity such as sounds. What helps me is putting things in the same place, preparing on the previous day, writing lists, splitting tasks into smaller parts and taking breaks. Generally organizing my environment so that it's hard to lose or forget something. Staying organized helps a lot. Also I find stimming helpful such as listening to music while studying and generally - to not fight the fidgeting. My therapist said that forgetting to eat is ADHD when I asked him. Maybe I should go ask someone else, but I get lost in what exactly the problem is. There are many problems, everything goes wrong.

But writing it down and hearing feedback helps a bit, perhaps I should go in the direction of:
- hypoglycemia, regular meals
- fixing the schedule

I'm just thinking out loud...

Have you tried non-stimulants options, such as Strattera?

 

[vergil96]

Have you tried non-stimulants options, such as Strattera?

Don't they work on the same receptors? I remeber from researching ADHD medications that non-stimulants work on the same receptors, but I can't recall what the difference is. I'm reading now that it might be the time they take to take effect and to reach target levels.

"Strattera (atomoxetine)
Strattera was the first FDA-approved non-stimulant ADHD medication. It is a selective norepinephrine (noradrenaline) reuptake inhibitor (SNRI). Strattera works similarly to selective serotonin reuptake inhibitors (SSRIs) that are used to treat depression by raising levels of the neurotransmitter norepinephrine in the brain. This can help some hallmark symptoms of ADHD: hyperactivity, inattention, and impulsivity."
I was advised against SNRIs by my doctor due to the profile of my symptoms.

"norepinephrine dopamine reuptake inhibitor (NDRI)"
This class of medications too.

Basically, I'm better off benefitting as much as I can from lifestyle modifications. Also after writing the previous post I feel like I might feel inappropriately guilty about requesting what I need, to the point that I get stressed and confused about my own needs as a result, it's so scary to approach and ask that it causes brain fog when even thinking about it. I need to talk with someone else sometimes to get my thoughts and feelings sorted, and even just saying it out loud (or typing it) helps so that I can hear it or read it later with more distance and approach my issues more analytically.

 

[vergil96]

I finally had a diabetologist visit today. I used the blood sugar sensor last week (I it broke after just a few hours) and I'm glad to hear I'm not making it up and to get a reasonable diagnosis and reccommendations:
- idiopathic hypoglycemia
- high-protein high-fat diet
- don't eat simple carbohydrates
- don't gain weight (easy), it would make it worse and lead to diabetes
- carry a snack and eat regularly
Basically nothing new, but I feel relieved and validated that I'm not making it up, because I have been told many times I am.

That might at least take some of the food pressure off you, because you knew that, normally, you could always have lunch at this hour, no matter whether you have a class then or not.

Hm, "taking off pressure" isn't a way I have thought about it yet, I wonder now what else could be a source of pressure.

 

[Fino]

Don't they work on the same receptors? I remeber from researching ADHD medications that non-stimulants work on the same receptors, but I can't recall what the difference is. I'm reading now that it might be the time they take to take effect and to reach target levels.

"Strattera (atomoxetine)
Strattera was the first FDA-approved non-stimulant ADHD medication. It is a selective norepinephrine (noradrenaline) reuptake inhibitor (SNRI). Strattera works similarly to selective serotonin reuptake inhibitors (SSRIs) that are used to treat depression by raising levels of the neurotransmitter norepinephrine in the brain. This can help some hallmark symptoms of ADHD: hyperactivity, inattention, and impulsivity."
I was advised against SNRIs by my doctor due to the profile of my symptoms.

"norepinephrine dopamine reuptake inhibitor (NDRI)"
This class of medications too.

Basically, I'm better off benefitting as much as I can from lifestyle modifications. Also after writing the previous post I feel like I might feel inappropriately guilty about requesting what I need, to the point that I get stressed and confused about my own needs as a result, it's so scary to approach and ask that it causes brain fog when even thinking about it. I need to talk with someone else sometimes to get my thoughts and feelings sorted, and even just saying it out loud (or typing it) helps so that I can hear it or read it later with more distance and approach my issues more analytically.

They do work on the same receptors but do so very differently from stimulants, resulting in a lack of stimulation. But if you prefer lifestyle modifications and can be content with that, that is actually preferred.