Not getting diagnosed due to masking?

[NorEspresso]

Hello,
I'm NorEspresso and I'm new to the forum and am here in the hopes to seek some sort of assistance to my current predicament.

I'm in my twenties, studying law, and have been doing sort of alright for myself through life. However, with beginning writing on my masters thesis this year things have started unraveling. The routine of going to seminars/lectures gone and having to work in a wholly different way than I have up until now in college, I've started to lose it. Missing deadlines to send over text to my supervisor, increasingly isolating myself from the extra-curricular activities that I genuinley enjoy doing, crying and hitting myself every night or so. I've reached the point where i have decided to opt for professional help. I have also had occasional passive suicidal ideation since 16.

The suspicion of autism doesn't come out of nowhere for me. I remember vividly when I was 5 years give or take looking at the fire in the fireplace and starting to wave my hands in excitement from watching something so living and amazing as flames. My father told me to "stop doing that with my hands". I asked him why and he simply said it doesn't look good. There are more cases of this throughout my life, like learning the hard way that others don't care for the roman empire of earoplanes (except a few), but the point is that I have learned to hide my mannerisms from others, and quite well I think. But this posed a challenge when i went to my physician for a refferal.

My physician asked me some basic questions like do i have certain repetitive behaviors (I said yes and gave some examples), do I have certain interests and can i tell him about them (I said yes but couldn't bring myself to go into detail like I knew he wanted, so I only briefly mentioned carbon steel cookware). He asked me if I'm happy (I'm currently very much not but I couldnt bring myself to say no, so I said yes). He wrote all of this down in the refferal and started talking about some 8 year old he worked with who knew a lot about trucks and I don't seem like him and I seem to do well in life because my grades are good in college and high school (what does it matter for my autism?). I didn't tell him about crying or hitting myself or passive suicidal ideation, because he never asked if I experience this.

This referral got almost immediatly rejected by the hospital, but I'm sure if I could express what it has really been like for me they would at least take me in for a real assessement. But how do I do that? from age 5 to 23 my life has been all about figuring out what people want to hear and hard programming this into myself so people don't get alienated from me - I can't just turn that off for some random doctor that isn't even a specialist in psychiatry. I still have have a legal right to a second referral form my physician but I have to say something different for a chance of a different result.

What do I do?

Cheers and thanks in advance.

 

[Outdated]

Throughout my whole life I've found most GPs to be worthless, little more than drug pushers.

When I wanted a diagnosis I went straight to an autism centre to self refer. Two very professional ladies sat down and chatted to me for half an hour, they both agreed that I should apply and I was in.

 

[NorEspresso]

Throughout my whole life I've found most GPs to be worthless, little more than drug pushers.

When I wanted a diagnosis I went straight to an autism centre to self refer. Two very professional ladies sat down and chatted to me for half an hour, they both agreed that I should apply and I was in.

Oh I would love to just talk to the autism center, but the system is set up that you just don't get to talk to the actual specialist without a referral from someone. It's completely stupid to filter referrals to specialist healthcare through non-specialists who don't know what their looking at nor knows how to actually get useful info. I almost suspect it's set up like this to reduce approved refferals on purpose to make healtcare services look better by artificially reducing the workload.

But nevertheless I need a referral, and I struggle to speak about the things that would get that referral approved. I could try to get a referral from college healthcare services but the problem of the referral's content still stands.

 

[Nitro]

This might sound like it is oversimplified, but why not write all of it down on your next visit to a professional and hand it to them?

 

[Outdated]

I always was pushy. If I had phoned these people I would have been told to go to a GP. Instead I walked through the door and introduced myself.

My avoiding using the phone is also an autistic trait. So too was my preference for walking there instead of catching a bus, I can't stand being trapped in a box with people wearing too much perfume.

 

[Rodafina]

Hello and welcome @NorEspresso!

What do I do?

Stay here, with us, on the forum! My experience here has been hugely enlightening and supportive with a lot of the things you mentioned – including suicidal ideation.

There’s all kinds of people here with different types of experience and understanding and advice. If you are like me, you can stay and talk as much or as little as you want, but also, read and read and read and read if you want to hear other stories somewhat like yours that you may resonate with. It does take time, settle if you like!

 

[Stuttermabolur]

Hello,
I'm NorEspresso and I'm new to the forum and am here in the hopes to seek some sort of assistance to my current predicament.

I'm in my twenties, studying law, and have been doing sort of alright for myself through life. However, with beginning writing on my masters thesis this year things have started unraveling. The routine of going to seminars/lectures gone and having to work in a wholly different way than I have up until now in college, I've started to lose it. Missing deadlines to send over text to my supervisor, increasingly isolating myself from the extra-curricular activities that I genuinley enjoy doing, crying and hitting myself every night or so. I've reached the point where i have decided to opt for professional help. I have also had occasional passive suicidal ideation since 16.

The suspicion of autism doesn't come out of nowhere for me. I remember vividly when I was 5 years give or take looking at the fire in the fireplace and starting to wave my hands in excitement from watching something so living and amazing as flames. My father told me to "stop doing that with my hands". I asked him why and he simply said it doesn't look good. There are more cases of this throughout my life, like learning the hard way that others don't care for the roman empire of earoplanes (except a few), but the point is that I have learned to hide my mannerisms from others, and quite well I think. But this posed a challenge when i went to my physician for a refferal.

My physician asked me some basic questions like do i have certain repetitive behaviors (I said yes and gave some examples), do I have certain interests and can i tell him about them (I said yes but couldn't bring myself to go into detail like I knew he wanted, so I only briefly mentioned carbon steel cookware). He asked me if I'm happy (I'm currently very much not but I couldnt bring myself to say no, so I said yes). He wrote all of this down in the refferal and started talking about some 8 year old he worked with who knew a lot about trucks and I don't seem like him and I seem to do well in life because my grades are good in college and high school (what does it matter for my autism?). I didn't tell him about crying or hitting myself or passive suicidal ideation, because he never asked if I experience this.

This referral got almost immediatly rejected by the hospital, but I'm sure if I could express what it has really been like for me they would at least take me in for a real assessement. But how do I do that? from age 5 to 23 my life has been all about figuring out what people want to hear and hard programming this into myself so people don't get alienated from me - I can't just turn that off for some random doctor that isn't even a specialist in psychiatry. I still have have a legal right to a second referral form my physician but I have to say something different for a chance of a different result.

What do I do?

Cheers and thanks in advance.

I am actually in a similar situation as you. In my case it is a different field of study, but otherwise quite similar, and I am also getting overwhelmed by how differently it works in practice than university (no clear goals for a start). In my country, you can't be diagnosed as an adult unless you are comorbid with some other diagnosis. This is quite frustrating for me since I also masked a lot like you, and actually have a very nice and supportive family who have done a lot to keep my mental health in check, even if only indirectly. Still, I think it would have been useful to get extra time on tests and suchlike (I was almost always the last person to leave the room and sometimes didn't quite manage to finish due to overthinking and slow writing).

What I suggest is that you try searching for a psychologist specializing in ASD in your area. Perhaps it is also possible through the internet. I found one near me by googling, and it was very helpful. I couldn't get an official diagnosis, but she did tell me straight out that I am almost certainly on the spectrum and I even went there again this year when I had burnout.

I do think it is very important to find one who knows something about ASD, not just any psychologist so that you don't have the same experience you just did a second time. Just having someone knowledgeable tell me about my condition was very helpful, and I later told my boss, even though I don't have an "official" diagnosis.

I wish you luck!

 

[Suzanne]

A dr said to me: you think you are on the autism spectrum? Not at all. I have many patients who are autistic and I can tell you, you are different from them, and laughed with a dismissive attitude.

After many years of being fearful of that reaction, I decided to just ride along and see how it went and then, one day, seeing a psychiatrist, my husband asked if I could be referred to someone who can diagnose me with aspergers? The therapist turned to me and asked me why? Now, usually, I would be stuck; but I had ALREADY ATTEMPTED ROLE PLAY and therefore was able to answer his questions and amazingly, he did not dig more; just said: ok, no probs.

Althought they are professionals, they can only go by what we say and how we behave.

So, you have to be honest with yourself. You have to, in effect, humble yourself, because you are putting yourself on that "slab" of nakedness, which automatically will cause a vunerability.

Also, a problem is, that it is only learning more, can we recognise traits. It was my husband who alerted me that I am a literal thinker and get obsessed quickly. I had not been aware of that. Stimming? Never heard of that before, but began to realise how much I do stim.

Funny, you should mention 5 year's old. Because, I was that age, when I realised I had anger issues and hated injustice. I was also told that I got most excitement from lining up things. I had no idea that was to do with aspergers!

If at all possible, can you bring someone along with you, who knows you and can be supportive? My husband was the one relating to the expert, what it is like living with me, which helped the therapist to have an "honest" apprasal of me. Because, my words alone, would not carry a lot of weight, as a lot will fake, to get things for free.

 

[Todd]

Hello,
I'm NorEspresso and I'm new to the forum and am here in the hopes to seek some sort of assistance to my current predicament.

I'm in my twenties, studying law, and have been doing sort of alright for myself through life. However, with beginning writing on my masters thesis this year things have started unraveling. The routine of going to seminars/lectures gone and having to work in a wholly different way than I have up until now in college, I've started to lose it. Missing deadlines to send over text to my supervisor, increasingly isolating myself from the extra-curricular activities that I genuinley enjoy doing, crying and hitting myself every night or so. I've reached the point where i have decided to opt for professional help. I have also had occasional passive suicidal ideation since 16.

The suspicion of autism doesn't come out of nowhere for me. I remember vividly when I was 5 years give or take looking at the fire in the fireplace and starting to wave my hands in excitement from watching something so living and amazing as flames. My father told me to "stop doing that with my hands". I asked him why and he simply said it doesn't look good. There are more cases of this throughout my life, like learning the hard way that others don't care for the roman empire of earoplanes (except a few), but the point is that I have learned to hide my mannerisms from others, and quite well I think. But this posed a challenge when i went to my physician for a refferal.

My physician asked me some basic questions like do i have certain repetitive behaviors (I said yes and gave some examples), do I have certain interests and can i tell him about them (I said yes but couldn't bring myself to go into detail like I knew he wanted, so I only briefly mentioned carbon steel cookware). He asked me if I'm happy (I'm currently very much not but I couldnt bring myself to say no, so I said yes). He wrote all of this down in the refferal and started talking about some 8 year old he worked with who knew a lot about trucks and I don't seem like him and I seem to do well in life because my grades are good in college and high school (what does it matter for my autism?). I didn't tell him about crying or hitting myself or passive suicidal ideation, because he never asked if I experience this.

This referral got almost immediatly rejected by the hospital, but I'm sure if I could express what it has really been like for me they would at least take me in for a real assessement. But how do I do that? from age 5 to 23 my life has been all about figuring out what people want to hear and hard programming this into myself so people don't get alienated from me - I can't just turn that off for some random doctor that isn't even a specialist in psychiatry. I still have have a legal right to a second referral form my physician but I have to say something different for a chance of a different result.

What do I do?

Cheers and thanks in advance.

You're spot on.
Knowing that you are right (& ASD), all that remains is to try again. You have to keep on trying until you are honest with your doctor. Worst case is you will be visibly distressed, maybe even crying, with the excruciating effort to open up. So even if you don't get there, any decent doc will take you seriously then.

 

[Neonatal RRT]

Just a few tips when preparing for an autism assessment, interview, and testing:
1. Take some time to write down an itemized list of your symptoms and relevant experiences. One might call it your "You might be autistic if..." list. Often times when we are confronted with an interviewer, two things may happen: (1) they might not be asking the correct questions in a way that you understand,...so you may be misinterpreting the intent of the question and then not answer appropriately. (2) our anxiety gets the better of us,...so we are too short in our answering, forgetting to elaborate when we should, and/or we only hear part of the question,...and then not answer appropriately.
2. Masking behaviors consciously or unconsciously. Females really struggle with this, in general, as statistically, they are much better at their social skills than males. Yes, there are functional imaging studies that demonstrate differences in conductivity and connectivity between male and female autistics that may result in these differences. Male or female, though, we have been taught to be polite and have our "people skills" on display when meeting someone,...and that's great,...but certainly NOT helpful when dealing with the psychologist who is evaluating you for an autism condition.
3. Many of us take supplements, medications,...even coffee and tea that may have caffeine and L-theanine in them,...and this alters neurotransmitter functioning,...sometimes enough to effect how we act and perform on cognitive performance testing. If anything you are taking is effecting your behavior therapeutically,...at least for the psychologist's testing and evaluation,...you might want to clear those from your system first. Be at your worst.

Basically, have all your information handy, because you might not be able to verbalize it in a meaningful way during an interview. Drop your masking as best you can,...all the fake socialization graces that you have to think about before doing. Be at your worst,...literally,...if you feel like crap without your morning coffee or tea,...walk in there feeling like crap. The psychologist needs to see you at your raw, naked, worst,...not the facade you present out in public.

 

[VictorR]

Welcome! Another consideration is whether you may be able to see another doctor or specialist, or even one in a different jurisdiction if you're seeking a second opinion?