There's no cure and doctor's don't care, so what's the point

[g1458]

I recently had a friend over who is a doctor, a practicing GP, with a degree in psychology. During the evening, he mentioned a patient of his who was inquiring about getting a diagnosis for autism. What he told us sounded like he was telling the patient to just accept life as it is and not pursue a diagnosis (that's the watered down version).

This attitude is commonly encountered when seeking help from medical practitioners. I feel like finding good help is like walking through a minefield. When we do find someone who can help, what help is available if there is no cure?

I would love to hear a story or 2 about how medical help in any form turned someone's life around before deciding if I should pursue a diagnosis.

 

[NB79]

You can get money in some countries or some accommodations, or idk what else for help.

Edit: ah, and welcome... your new here.

 

[g1458]

Thanks for the welcome @NB79

But money? That's not really the help I'm looking for.

If anyone has a story to share about how a diagnosis and the help of a medical practitioner, maybe through therapy and or medication, brought a substantial change to your life, substantial enough to recommend, or to say "what are you waiting for? Get the diagnosis!", I would love to hear exactly what you did and how things changed.

 

[Neonatal RRT]

Keep in mind that the "medical model" (genetics, anatomy, physiology, etc.) has only gained a broader perspective within the past 5-10 years. Prior to that, it was primarily a psychological condition with an unknown cause. As such, many medical practitioners do not understand nor recognize autism in adults unless the person is severely effected. The typical Asperger's/ASD-1 variant is likely more common than what the statistics would suggest. Honestly, working in hospitals for over 35 years, I suspect a significant percentage of physicians, themselves, are likely on the spectrum and are literally clueless as to their condition. I have known a pediatric cardiac surgeon, a pediatric neurosurgeon, and a clinical ophthalmologist that were definitely on the spectrum. Most people, including the healthcare establishment, associate autism with the pediatric population, and not adults. I work at one of the largest children's hospitals in the US, we see autistic children daily, but when I had admitted my autism diagnosis to my co-workers, some were surprised, most didn't want to talk about it, and even my closest co-workers were like "Ok" or were silent. So yes, the "medical establishment" is significantly ignorant on this topic.

You are correct in that there is no cure. However, with a well-tailored regimen of diet, supplements, therapies, self-awareness, and sometimes medications, one can reduce some of the symptoms, as well as, improve the communication and social skills to some extent. It's all about "management" of the condition. Some people go through their life without the need for assistance. Some people are highly successful in life because of their autism, not in spite of it. Now if you are seeking help in terms of assistance, accommodations, etc. then an official testing and diagnosis will be required. If you are one that is "self-diagnosed", then you're on your own.

 

[MildredHubble]

I find that a lot of doctors have an infantalising attitude to patients. It really isn't the job of a doctor to decide if something is worthwhile personally to a patient. They are doctors, not parents, and even if they were I would question the benefit of willfully keeping people ignorant "for their own good".

It's bad enough that medical errors are made that can cause problems for people and their health. But when a doctor decides to impose their personal ideology on to someone else, I find that indefensible behaviour. It can adversely affect people's lives.

I was 26 before my dyslexia was diagnosed and it only took that long because my mother lied to me about being tested previously. Her justification was that it would be better for me as people would think I was attention seeking or getting an unfair advantage.

When I did finally get diagnosed, it was all a bit of a moot point since I had battled through everything thinking that I was just dumb, and had gotten through what I needed to academically. But the reality is that if I had understood fully why I had struggled, I may have been more successful and had more confidence.

I think getting a diagnosis one way or the other when it comes to ASD can be important for a lot of reasons. Other people's beliefs as to what they would prefer the diagnosis to be are completely irrelevant.

It does concern me that some arrogant people could be falsely diagnosing people who are on the spectrum as not having ASD because "it will do them good" to continue in ignorance.

 

[NB79]

But money?

Maybe that sounds bad, "You can get financial support for disability"

 

[g1458]

@NB79 I appreciate it, and understood your point of view, I did answer a little quickly though, nonetheless I am seeking other forms of help... more along the lines of “If you give a man a fish, you feed him for a day. If you teach a man to fish, you feed him for a lifetime.” Although I am not without skills, I have suffered from burnout and do not ever want to back there. I have chosen another line of work but still seem to suffer from anxiety.

 

[Atrapa Almas]

If/when you confirm that you are on the spectrum you may aply spectrum like tactics and ways of doing things that do work for us, and improve some aspects of your life.

Self diagnostic is also valid.

 

[NB79]

@NB79 I appreciate it, and understood your point of view, I did answer a little quickly though, nonetheless I am seeking other forms of help... more along the lines of “If you give a man a fish, you feed him for a day. If you teach a man to fish, you feed him for a lifetime.” Although I am not without skills, I have suffered from burnout and do not ever want to back there. I have chosen another line of work but still seem to suffer from anxiety.

I think a lot of help can come from other autistics when they share their problems, and ways they deal with them, then you can identify better the issues and maybe deal better with them.

 

[Gerald Wilgus]

I would love to hear a story or 2 about how medical help in any form turned someone's life around before deciding if I should pursue a diagnosis.

I was having to withdraw from things when I was triggered lest I act rashly. But I did not have the vocabulary to describe what I felt until I was diagnosed at age 60. 11 years later I finally learned about PTSD and the past year I have been working with a counselor I trust to reprogram myself using Cognitive Processing Therapy. It has been a month since I have been triggered and my spouse thinks I am happier (I am). It has not been easy to bare my soul to myself.

 

[VictorR]

Welcome! I agree with the others - if you're looking for help, there lots of online resources (including communities like this one here), books and videos on a variety of different strategies on how to adapt yourself to different environments (while trying not to mask and burn out) and build resiliency.

Getting a formal diagnosis is something that isn't necessarily recommended given the cost and time it often takes unless you need it for access to specific supports, be it support for work, or access to a disability program.

 

[zophia]

I am lucky to have found a psychiatrist who is amazingly understanding of autism. She doesn't see autism as negative. She notes we show more empathy than sympathy. The dsm5 diagnoses autism on only deficit based criteria. In many places a formal diagnosis will do more harm than good, the cost of a diagnosis is outrageous

 

[zophia]

I am lucky to have found a psychiatrist who is amazingly understanding of autism. She doesn't see autism as negative. She notes we show more empathy than sympathy. The dsm5 diagnoses autism on only deficit based criteria. In many places a formal diagnosis will do more harm than good, the cost of a diagnosis is outrageous and if you are over 40 there are very few helpful resources. That's why a psychologist may suggest against it. There are many resources that are open to people with self diagnosis or alternative diagnosis.

Autism isn't a disability in all cases but it does present many common challenges. Most of the most talented inventors, artists, researchers and activists are autistic. Like Bill Murray and many others.

No there isn't a cure, nor is their a cure for neural typicals. There was a study that put a bunch of NTs and one ND in a room and the ND was isolated and not accepted. They also had a room with a bunch of NDs and one NT and they were accepted not isolated.

 

[Progster]

In my case, I knew that being diagnosed as an adult self-employed person was unlikely to bring many benefits in the way of financial help or accommodations. But what it did bring is closure. I've been through some tough times in life, as have many autistic people, and I finally had an explanation for this. For many autistic people, the diagnosis is a relief. Most autistic people aren't seeking a cure; they feel that autism is a part of who they are and if you took that away, they would be a different person.

I was lucky to have a GP who took my concerns seriously and agreed right away to refer me. But yes, doctors can be hit-and-miss.

 

[Kayla55]

I was having to withdraw from things when I was triggered lest I act rashly. But I did not have the vocabulary to describe what I felt until I was diagnosed at age 60. 11 years later I finally learned about PTSD and the past year I have been working with a counselor I trust to reprogram myself using Cognitive Processing Therapy. It has been a month since I have been triggered and my spouse thinks I am happier (I am). It has not been easy to bare my soul to myself.

I think I said this on a thread before but how does a diagnosis change you, um, a bit of clarity. But at the end of day you still feel n think about things differently, it's just with diagnosis now more of a big picture that you not alone. But as you return to your life it's back to all those things that you couldn't help but notice, for me selfishness, lying etc

I am also a trauma or by today's standards an abuse survivor. A lot was different for us because others definately had an advantage whild we were in survival mode. Maybe it's having aspies parents, growing up differently.

Not just autism but I got many cold shoulders in life and at time I didn't appreciate it but you learn and answers come later on and it makes more sense. Maybe journey of self discovery, growing on your own, struggles make us stronger

 

[Atrapa Almas]

There was a study that put a bunch of NTs and one ND in a room and the ND was isolated and not accepted. They also had a room with a bunch of NDs and one NT and they were accepted not isolated.

Hello @zophia,

If you can share a link to that study, I would like to read it.

Thanks.

 

[Slime_Punk]

I agree with @Progster; it doesn't really give you a hall pass or anything super cool, but sometimes it's nice to give yourself the permission to just be autistic, even if it's stimming when no one's around or other small things.

Lately I've gotten better with disclosing it, as in, "I have this thing going on, it's not an excuse and you can still call me out my BS, but this is why I seem a little different". I wouldn't have had the strength to even talk about it without a diagnosis, or deal with it head-on because society kind of dismisses adults with very high-functioning ASD.

 

[Progster]

I agree with @Progster; it doesn't really give you a hall pass or anything super cool, but sometimes it's nice to give yourself the permission to just be autistic, even if it's stimming when no one's around or other small things.

Yes, I could stop being so hard on myself, and that benefited my mental health.

 

[Alexej]

I would love to hear a story or 2 about how medical help in any form turned someone's life around before deciding if I should pursue a diagnosis.

I pursued diagnosis as although it gave me a label it also did enable me to tell people that it was not that I was being an awful person, it was that I was autistic, and thus it was part of who I was.

I was intensely resistant to getting a dx and label to begin with, but the choice came down to being a bad person or being autistic - a label either way

 

[Nervous Rex]

I recently had a friend over who is a doctor, a practicing GP, with a degree in psychology. During the evening, he mentioned a patient of his who was inquiring about getting a diagnosis for autism. What he told us sounded like he was telling the patient to just accept life as it is and not pursue a diagnosis (that's the watered down version).

This attitude is commonly encountered when seeking help from medical practitioners. I feel like finding good help is like walking through a minefield. When we do find someone who can help, what help is available if there is no cure?

I would love to hear a story or 2 about how medical help in any form turned someone's life around before deciding if I should pursue a diagnosis.

I have had the same experience and the longer I am on this site, the more I see happening to others, too. When I discovered I was autistic, I told a friend of mine who is a psychiatrist. He said, "You have a family, a job, and you're functioning, so why worry about it?"

The "why worry" was because I was struggling! It doesn't matter that I was holding down a job and keeping my marriage together and raising kids - I felt like I was drowning. I felt like I was faking my way through my entire life, just doing what I thought I was supposed to do and acting how I thought I was supposed to act, and suffering from non-stop anxiety the whole time.

To get a formal diagnosis, you must be in need of some form of help or support. That's in the DSM-V, which lists the specific criteria required to diagnose someone with Autism Spectrum Disorder.

And this is why a diagnosis matters. It doesn't matter what my life looked like from the outside - I needed help. In my case, I went to a counselor for help working through some things and learning how to cope with others. For others, their support and help may be social programs or accommodations at school or work.

One of the best things I got out of my diagnosis was learning that I really am different and I don't have to try to function the way everyone else does. I like to say that I was reading the wrong owner's manual my whole life. It was like everyone else was a sports car and I was a bull dozer wondering why I can't do what they do. Turns out that there are things I can do that they can't, but only if I understand myself well enough. Now, I know I need to ignore what works for everyone else and do what works for me. That alone has relieved so much of my stress and anxiety.

Those who say, "There's no cure so why worry?" or "You seem to be doing fine, so what's the difference?" are only looking at the surface. They only see the masks we put on to be accepted and think that means everything is fine. If someone isn't willing to take the time to really see you and understand your experience, then you are better off ignoring their opinion, professional or not.

To sum up, a diagnosis can get you two things:
1) Access to support. This may be social programs, accommodations, or just more understanding from those around you.
2) Better understanding of yourself.

Welcome to the forum, @g1458. I hope you find this place as welcoming and helpful as I have.