not feeling valid when navigating medical system

[Sab]

Hi there,

I’m going through a pretty hard time lately and thought it could be helpful to share with others on this site.

I had an appointment with my new family doctor today. I told him that I thought I was on the spectrum and felt pretty invalidated by his responses. He sent out a request for a psychiatrist but that might take a while. I feel really scared and anxious navigating the medical system but think a diagnosis would be helpful in obtaining financial aid. But I feel really really anxious at the thought of not getting a diagnosis. Although I believe I’m the best person to know what feels true to me and what has been helpful, it is really hard to stay centered on my needs and limitations when I keep feeling invalidated by society at large.

I’m just feeling really really exhausted right now simply trying to juggle life. And I just want to get to a point where I can take it easy for a while because it feels like my body can’t take it anymore.

I wonder if anybody here shared similar fears when seeking diagnosis or navigating the medical system and what was helpful to them?

Thanks a lot,

Sab

 

[asperagus]

I'll admit that I get very anxious when hearing any medical stuff for the first time. My advice is to sit down on the floor next to a jug of water if needed. There's no easy route for us, unless you have another solution for anxiety. In my case, it does not prevent me from functioning day to day, so I don't do anything about it. But I do go wash my face if I'm about to black out.

If the diagnosis gets you funding, then do it. Life is hard enough as it is. It may be a challenge now, but there's very tangible light at the end of the tunnel.

 

[Clueless in Canada]

I'm in a similar position, Sab. I recently asked my doctor to refer me to a psychiatrist and that is now 'in the works' but it could be months before I have an appointment and who knows what will happen then. My doctor has been pretty good and hasn't outright doubted my self diagnosis but unsurprisingly has told me I need to accept what the psychiatrist says. I pointed out that a diagnosis could be wrong and he agreed.

I am certainly nervous and feel both anxious for a diagnosis and fearful that I won't get one. I think this is what you are expressing too. I can't say I have a strategy other than knowing this will take time and accepting that. I find that I feel better if I feel very prepared for whatever I have to face so I devote some time to research and preparing my case. I have extensive notes on why I believe I am on the spectrum and specifically how I meet the diagnostic criteria. I am prepared for the likelihood that the psychiatrist knows little about autism and even less about adult females on the spectrum.

 

[Progster]

I felt very anxious when I had my assessment that I might not be diagnosed and that I would be left with no answers and no closure for past and present difficulties in my life. I was scared that he might be dismissive of my problems, and that I might be subject to tests such as an IQ test, or an ADOS test, and that I might 'fail' it, if that's the right word to use, but everything went well and I received my diagnosis.

It's important to see a psychiatist with experience of adults on the spectrum, and with females on the spectrum if you are female, a clinician who is able to see through the masking and coping strategies often adopted by adults on the spectrum, and is aware of the fact that in adults it's often about their internal rather than external ability to cope. In my experience of being on forums, those who come here with suspicions that they are on the spectrum (usually having frantically researched it) usually are on the spectrum and go on to receive a diagnosis.

 

[Gracey]

I don’t really trust the medical system, in general anyway, (UK NHS)

Seems to be more about saving money and cutting costs than saving people.

I have often wondered whether or not one individual (medical) who spends a couple of hours in total (spread over 2 or 3 sessions)
Could get a true measure of; in my case, 40/50 years of experiences.

It would be up to me to give them that information.
What if, on the day, I can’t ?
(Lose it, shut down, overwhelmed)

I suspect I have some highly developed and convincing acting skills, outwardly.

Get under the surface of that and it’s quite a different story.

It sometimes feels like no matter what I might say to doctors and others, I won’t be believed.

 

[Sarah S]

In my case as i have been tested and diagnosed MULTIPLE times since 4 and up im cind of used to it so it dont bother me one bit even when i discover new ones my self (CLEARLY resurched and tested AND clarified to be within my Former diagnosis (ie MBD, ADHD,ASD ,) to me it just help add more peaces to the jigsaw puzzle that is my brains Multiple diagnosis. I suspect i will continue to discover new diagnosis my self for the rest of my life as according to my latest evaluation from my shrink " its clearly stated there is MULTIPLE diagnosis yet to discover but the ods of finding them all is next to impossible " So they have stopped trying (shrugging shoulders ) i should add that for MBD there is 100 + validated side diagnosis alone

 

[Sab]

I'll admit that I get very anxious when hearing any medical stuff for the first time. My advice is to sit down on the floor next to a jug of water if needed. There's no easy route for us, unless you have another solution for anxiety. In my case, it does not prevent me from functioning day to day, so I don't do anything about it. But I do go wash my face if I'm about to black out.

If the diagnosis gets you funding, then do it. Life is hard enough as it is. It may be a challenge now, but there's very tangible light at the end of the tunnel.

Thanks asperagus. I find it hard to see the light at the end of the tunnel sometimes but when I think about how far I’ve come already it gives me courage to keep on trying to build a solid base for myself.

 

[Sab]

I'm in a similar position, Sab. I recently asked my doctor to refer me to a psychiatrist and that is now 'in the works' but it could be months before I have an appointment and who knows what will happen then. My doctor has been pretty good and hasn't outright doubted my self diagnosis but unsurprisingly has told me I need to accept what the psychiatrist says. I pointed out that a diagnosis could be wrong and he agreed.

I am certainly nervous and feel both anxious for a diagnosis and fearful that I won't get one. I think this is what you are expressing too. I can't say I have a strategy other than knowing this will take time and accepting that. I find that I feel better if I feel very prepared for whatever I have to face so I devote some time to research and preparing my case. I have extensive notes on why I believe I am on the spectrum and specifically how I meet the diagnostic criteria. I am prepared for the likelihood that the psychiatrist knows little about autism and even less about adult females on the spectrum.

Hey Clueless in Canada, thanks for sharing. It felt very validating. I think I would also feel relief if I prepared myself for the psychiatrist appointment (I had already started this months ago but then decided not to seek one until I changed my mind recently for financial reasons). There would be less pressure in having to express myself on the spot. That’s what felt frustrating about the conversation I had with my new family doctor. I felt like I had to “convince” him on the spot that I was on the spectrum.

As you said, I think it really depends on who I meet with and their knowledge of autism and female (or humans socialized as female) on the spectrum.

No pressure whatsoever but if you are drawn to share with me in PM, I am also going through that process in Canada (Quebec) and would be happy to hear more about your process and experience.

 

[Sab]

I felt very anxious when I had my assessment that I might not be diagnosed and that I would be left with no answers and no closure for past and present difficulties in my life. I was scared that he might be dismissive of my problems, and that I might be subject to tests such as an IQ test, or an ADOS test, and that I might 'fail' it, if that's the right word to use, but everything went well and I received my diagnosis.

It's important to see a psychiatist with experience of adults on the spectrum, and with females on the spectrum if you are female, a clinician who is able to see through the masking and coping strategies often adopted by adults on the spectrum, and is aware of the fact that in adults it's often about their internal rather than external ability to cope. In my experience of being on forums, those who come here with suspicions that they are on the spectrum (usually having frantically researched it) usually are on the spectrum and go on to receive a diagnosis.

Hi Progster, that’s exactly what I fear about not being diagnosed. I finally have words and tools for my life-struggles and I’m scared of that being dismissed by the psychiatrist and to be left with no answers.

Yeah, I was assigned female at birth (and identify as non-binary today) and definitely think that some autistic traits I don’t show because of masking strategies I learned growing up. A lot about being socialized as female is about “fitting in” and being attentive to other people’s feelings and pleasing other people’s needs and less about self-expressing internal states.

Thanks for the validation and advice.

 

[Sab]

I don’t really trust the medical system, in general anyway, (UK NHS)

Seems to be more about saving money and cutting costs than saving people.

I have often wondered whether or not one individual (medical) who spends a couple of hours in total (spread over 2 or 3 sessions)
Could get a true measure of; in my case, 40/50 years of experiences.

It would be up to me to give them that information.
What if, on the day, I can’t ?
(Lose it, shut down, overwhelmed)

I suspect I have some highly developed and convincing acting skills, outwardly.

Get under the surface of that and it’s quite a different story.

It sometimes feels like no matter what I might say to doctors and others, I won’t be believed.

Yeah, I don’t trust it either. I hesitated a lot before going through the process of speaking to a doctor about it and potentially a psychiatrist for similar reasons that you state. How could someone I meet for an hour get a grasp of my experienced reality?

When I talked to my doctor about it, I felt like I had to perform, to convince him and was still invalidated because I didn’t show some autistic traits (basically that I was able to talk to him and look him in the eye). He wasn’t the worst person ever, but still had hurtful behavior because of his ignorance of the variety of autistic realities.

I empathize a lot with what you say share about having convincing acting skills and how different it feels in the inside than what you show to the outside world.

The impact of people’s ignorance can be so hurtful.

Take care

 

[Sab]

In my case as i have been tested and diagnosed MULTIPLE times since 4 and up im cind of used to it so it dont bother me one bit even when i discover new ones my self (CLEARLY resurched and tested AND clarified to be within my Former diagnosis (ie MBD, ADHD,ASD ,) to me it just help add more peaces to the jigsaw puzzle that is my brains Multiple diagnosis. I suspect i will continue to discover new diagnosis my self for the rest of my life as according to my latest evaluation from my shrink " its clearly stated there is MULTIPLE diagnosis yet to discover but the ods of finding them all is next to impossible " So they have stopped trying (shrugging shoulders ) i should add that for MBD there is 100 + validated side diagnosis alone

Hey Sarah, yeah it’s a life-long process to get to know our brains, behaviors and needs. I guess there is always more to discover and that there is also a limit to language and diagnosis in representing the range of human brains and experiences.

 

[fitnessfairy]

Hi there,

I’m going through a pretty hard time lately and thought it could be helpful to share with others on this site.

I had an appointment with my new family doctor today. I told him that I thought I was on the spectrum and felt pretty invalidated by his responses. He sent out a request for a psychiatrist but that might take a while. I feel really scared and anxious navigating the medical system but think a diagnosis would be helpful in obtaining financial aid. But I feel really really anxious at the thought of not getting a diagnosis. Although I believe I’m the best person to know what feels true to me and what has been helpful, it is really hard to stay centered on my needs and limitations when I keep feeling invalidated by society at large.

I’m just feeling really really exhausted right now simply trying to juggle life. And I just want to get to a point where I can take it easy for a while because it feels like my body can’t take it anymore.

I wonder if anybody here shared similar fears when seeking diagnosis or navigating the medical system and what was helpful to them?

Thanks a lot,

Sab

 

[Sarah S]

Hey Sarah, yeah it’s a life-long process to get to know our brains, behaviors and needs. I guess there is always more to discover and that there is also a limit to language and diagnosis in representing the range of human brains and experiences.

Hey there

The BEST advice i can give you in this is DONT get stuck on particular diagnose dear (in this case Asperger/ASD ) it can be either one or as in my case MULTIPLE so keep youre mind OPEN dear

You should also know that many of this diagnosis co exists to eatchoder hence i mention my MBD = minimal brain damage from birth complications which among the 100 + Side diagnosis are actually ASD /ADHD (and all my stipulated diagnosis in my Sig and profile actually )

Also reg this cind of diagnosis they are HIGHLY INDIVIDUAL Yes there are some chaired common main symptoms but other than that its individual. And yes as been stated in us females the signs are more suptle then the males so yes in us its not unusual that we get our ASD Etc.... Diagnose in later years (i got my ASD diagnose when i was 30 latest evaluation )

 

[Clueless in Canada]

No pressure whatsoever but if you are drawn to share with me in PM, I am also going through that process in Canada (Quebec) and would be happy to hear more about your process and experience.[/QUOTE]

Hi Sab, I'm on Vancouver Island. I'm told there are three psychologists in Vancouver who diagnose adult autism but getting to see one of them would be very difficult for me. It isn't ruled out but I am hoping not to have to go that route. At the moment I am just waiting to hear if a local psychiatrist has taken me on and to be phoned and given an appointment. I imagine that could be months from now so I've got nothing I can share with you privately or otherwise that is of any help. I find that obsessive prepping is the best method I've got for channeling my anxiety about it into productive activity. It's unlikely whichever doctor I see will have much knowledge or experience in adult/female autism but I am hoping he/she will be willing to learn.

 

[Sab]

No pressure whatsoever but if you are drawn to share with me in PM, I am also going through that process in Canada (Quebec) and would be happy to hear more about your process and experience.

Hi Sab, I'm on Vancouver Island. I'm told there are three psychologists in Vancouver who diagnose adult autism but getting to see one of them would be very difficult for me. It isn't ruled out but I am hoping not to have to go that route. At the moment I am just waiting to hear if a local psychiatrist has taken me on and to be phoned and given an appointment. I imagine that could be months from now so I've got nothing I can share with you privately or otherwise that is of any help. I find that obsessive prepping is the best method I've got for channeling my anxiety about it into productive activity. It's unlikely whichever doctor I see will have much knowledge or experience in adult/female autism but I am hoping he/she will be willing to learn.[/QUOTE]

Hey! Yeah I'm in the same position, waiting for the call and will probably see a random psychiatrist and not someone who specializes in autism or females on the spectrum. But we never know! And it would be great if in both our cases the person was just willing to hear us out and to learn. Good luck with the waiting and preparing, take care!

 

[Suzanne]

I believe the expression is: been there and have the tshirt ( despite never wearing tshirts).

Generally, as well has having aspergers, we have other issues too, so I concentrated on being formally diagnosed with social phobia ( and agerophobia), which even my dr had no issue believing, whereas she mocked me when I said about aspergers.

I was too scared to mention it to my psychiatrist, but in truth, the therapy was not going anywhere and so, it was my husband who raised the subject and from that moment, 3 week's ago, I was formally diagnosed with grade 2 to 3 ASD.

For me, the "expert" concentrated on childhood ( I do see why though) and all the typical traits of aspergers were barely mentioned; it was more the subtle ones.

I honestly thought I would always remain a self diagnosed aspie and so, really in sort of shock that it is the opposite.

I have had my dr laughing and another therapist telling me that no way do I have aspergers, so I felt really disheartened.

Knowing that I had a lot of support and validation on here, helped a great deal.

 

[Sab]

I believe the expression is: been there and have the tshirt ( despite never wearing tshirts).

Generally, as well has having aspergers, we have other issues too, so I concentrated on being formally diagnosed with social phobia ( and agerophobia), which even my dr had no issue believing, whereas she mocked me when I said about aspergers.

I was too scared to mention it to my psychiatrist, but in truth, the therapy was not going anywhere and so, it was my husband who raised the subject and from that moment, 3 week's ago, I was formally diagnosed with grade 2 to 3 ASD.

For me, the "expert" concentrated on childhood ( I do see why though) and all the typical traits of aspergers were barely mentioned; it was more the subtle ones.

I honestly thought I would always remain a self diagnosed aspie and so, really in sort of shock that it is the opposite.

I have had my dr laughing and another therapist telling me that no way do I have aspergers, so I felt really disheartened.

Knowing that I had a lot of support and validation on here, helped a great deal.

Hey Suzanne,

This forum has been a great source of support and validation for me too.

I'm sorry you've had such bad experiences with your doctor and therapist. It frustrates me a lot when <experts> have so much power and when their biased opinion of your experience counts wayyyy more than the experience itself.

Thanks a lot for sharing!

 

[Dias]

Hello.
I am waiting for 3 months for an appointment with a psychiatrist to see if I am on the spectrum or not.
I am in a foreign Country, speaking in a foreign language and have no idea if the doctor will be specialised in Autism in female adults.
To be honest I don't believe that I will be diagnosed because if I am on the spectrum it is very mild and I need no support at all, so I think the doctor will never see it... I don't know how to prepare for these things...I will probably be there in front of him and will go totally mute and with an empty mind; I never remember anything to say when necessary.
But I am at peace with it because whatever it is I have I am learning to handle it with diagnose or not.
And above all I am learning to be myself.
In this forum I learned that exists so much diversity inside Autism itself that saying "I have autism" doesn't really describe you.
It will only describe certain aspects of you.

 

[Sab]

Hello.
I am waiting for 3 months for an appointment with a psychiatrist to see if I am on the spectrum or not.
I am in a foreign Country, speaking in a foreign language and have no idea if the doctor will be specialised in Autism in female adults.
To be honest I don't believe that I will be diagnosed because if I am on the spectrum it is very mild and I need no support at all, so I think the doctor will never see it... I don't know how to prepare for these things...I will probably be there in front of him and will go totally mute and with an empty mind; I never remember anything to say when necessary.
But I am at peace with it because whatever it is I have I am learning to handle it with diagnose or not.
And above all I am learning to be myself.
In this forum I learned that exists so much diversity inside Autism itself that saying "I have autism" doesn't really describe you.
It will only describe certain aspects of you.

Hey Dias, thanks for your input. I totally agree that everybody (autistic or not) is unique and that learning about yourself and to be yourself is what will be most helpful in living a joyful life.

I think a diagnosis would be helpful for financial reasons but I think I'm realizing that I'm having a bit of a hard time feeling valid without it.


I hope your process goes smoothly.

 

[Gracey]

I’ve been thinking about this thread and validation when navigating medical services.

I’m starting to wonder if I dislike the whole process because I don’t know how to ‘be’

I’m ‘me’ because I’ve never seen how others do it ?
Nothing to copy or mimic ?

If I’m too assertive I feel like I’m pissing them off.
Telling them my diagnosis, how to do their job.

Too nice and polite and things start to get twee.
Waste of time.



Maybe a method, acronym (?) or script to follow?

You know,
on those days when you never see the same doctor in a busy practice twice,
and they’ve barely had time to read over your notes between patients.

Or eloquence evades you and you’re stumbling over wording or going off on a tangent.

Medical professionals aren’t mind readers, it’s up to us to relay the information right ?
But in a way that gets that validation we would like ?