Misdiagnosed as bipolar and lack of support from doctors

[Renzler]

Hello Everyone,

For the past two years I have gradually convinced myself that I am on the spectrum. I think seeing a higher representation of people with ASD in TV shows and Movies initially sparked my realization. I seemed to always relate to characters with ASD more and more until I finally started to research the symptoms and behaviors of people with ASD.

I've done multiple behavioral tests like the Autism Spectrum Quotient and Empathy Quotient.

Autism Spectrum Quotient Score: 44 out of 50
"Scores in the 33-50 range indicate significant Autistic traits"

Empathy Quotient Score: 10 out of 80
"Scores of 30 or less indicate a lack of empathy common in people with ASD"

I even redid the test with my girlfriend of 3 years to make sure I was giving genuine answers.

My History

• When I was a kid I used to have what the doctors called "panic attacks" all the time. I never cried or had emotional responses to things like deaths in the family.
• When I was 17 I was diagnosed with Depression and put on anti-depressants.
• It was common for people to call me a robot because of my lack of facial expression and monotone voice.
• Everyone I had a relationship with always had issues being unable to tell how I feel and that I didn't show emotions.
• When I was 23 I was diagnosed with Bipolar and Social Anxiety, they attempted to put me on anti-depressants again, but I refused.

I'm 27 years old now and I went to my doctor to ask for a referral to try and be analyzed for ASD because I am positive I am not Bipolar. (I've read that ASD in adults is often misdiagnosed as Bipolar or ADHD). I was incredibly discouraged by how quickly he dismissed when he told me they don't give referrals for that and that I'm on my own.

So I asked for a second opinion on the Bipolar diagnosis. I finally got that appointment with a psychologist yesterday and after speaking with him for about an hour, he said he didn't have enough information to determine if I was bipolar or not. He asked me what I thought and I told him that I thought I could be on the spectrum. He kinda just laughed it off and said not to talk to Dr. Google.... and that there is no point in putting labels on it. It almost seem like they aren't taking me seriously.

It's starting to seem hopeless for me to get any definitive answers on why I feel, think and act so differently then most people I know.

When I lookup symptoms of ASD in adults, they describe me perfectly.

• Difficulty interpreting what others are thinking or feeling
• Trouble interpreting facial expressions, body language, or social cues
• Difficulty regulating emotion
• Trouble keeping up a conversation
• Difficulty maintaining the natural give-and-take of a conversation; prone to monologues on a favorite subject
• Tendency to engage in repetitive or routine behaviors
• Only participates in a restricted range of activities
• Strict consistency to daily routines; outbursts when changes occur
• Deep knowledge of one particular topic, such as a certain branch of science or industry
• lack of social awareness
• lack of interest in socializing/making friends
• difficulty making and sustaining friendships
• inability to infer the thoughts, feelings, or emotions of others
• either gazing too intently or avoiding eye contact
• lack of changing facial expression, or use of exaggerated facial expressions
• lack of use or comprehension of gestures
• inability to perceive nonverbal cues or communications
• failure to respect interpersonal boundaries
• unusually sensitive to noises, touch, odors, tastes, or visual stimuli
• stereotypical and repetitive motor patterns such as hand flapping or arm waving.

I guess I'm just looking for an opinion on my situation from people who have experience with ASD.

Thank you for taking the time to read through my rambling mess of issues and I appreciate any insight.

 

[Fino]

I once suggested to a doctor that I felt like I had Borderline Personality Disorder. He laughed and explained some psychological phenomena common among medical students where they all think they have the things they're reading about. Almost a year went by, this twenty second conversation had been forgotten, and I attempted suicide after *insert long story*. After I had gotten out of the hospital ten days later, at my next visit with my doctor, he asked me if I have ever heard of Borderline Personality Disorder and that he thought I had it. He had completely forgotten about me asking months prior, and I didn't tell him.

Ridiculous, huh? Keep trying. You know yourself better than they know you.

I can see it from their side, I think. I'm sure they have people coming in all the time with ridiculous self-diagnoses and now they've become entirely dismissive of them. You'll just have to find someone who hasn't become that way.

Can you just see an autism specialist?

 

[Suzanne]

I have been laughed at too and it is horribly disconcerting and frustrating!

Finally, I figured that if my husband was to ask my therapist, a different reaction might ensue and sure enough, when my husband posed the question, at first my therapist dismissed it and said: no, I am sure she has ptsd ( I do have that also), but a surge of power got me to deny that and he then said: so you think you tick most of the boxes for aspergers? And after he got an affirmation, he phoned a hospital, where they diagnose and I am being formally diagnosed next tuesday for aspergers.

Ideally you need someone who knows you well, to be your advocate.

 

[Graphin]

I once suggested to a doctor that I felt like I had Borderline Personality Disorder. He laughed and explained some psychological phenomena common among medical students where they all think they have the things they're reading about.

He had completely forgotten about me asking months prior, and I didn't tell him.

Many discussions i had with neurotypicals had a similar element to it

 

[Kirsty]

I am being formally diagnosed next tuesday for aspergers.

Great. Let us all know how you got on. (Which I’m sure you will, anyway.)

 

[Bella Pines]

It's starting to seem hopeless for me to get any definitive answers on why I feel, think and act so differently then most people I know.

Well I can answer you right now. You feel, think and act differently because you are a conscious being and have your own distinct personality.

Now that that's answered, you need to figure out what it is you need.

For example, are you looking for;

• Validation and comfort. For someone to tell you that you just have a medical condition and that it's all going to be okay.
• A cure. For someone to tell you that with some drugs you can be exactly like everyone else
• A place to belong. For someone to tell you that you fit neatly into a category of personality disorders and that there are others like you.
• An excuse. For someone to tell you that you offend people but can't help it.
• An explanation. For someone to explain how your brain works.
• Benefits. For someone to offer therapy or someone to talk to.
• Attention. For your family and friends to go "oooh so that's why you're so different" and hug you and suddenly accept you for who you are.

Once you figure out exactly what you are looking for, you can stop chasing your tail and go get it.

 

[Autistamatic]

What country are you in @Renzler ? If we know that then any specific advice on getting a diagnosis might be easier. Other than that - as said above, knowing for certain your reasons for wanting this diagnosis might help you to focus your efforts.

 

[OkRad]

Happens all the time, especially to women, but often to men, too.

I even HAD the dx of pdd and autism NOS. I had headbanging and sensory issues and such a strict routine I cannot even go to a Dr without getting stressed. I even have been karyotyped and discovered aberrations on Chrom 6 which are consistent with Aspergers specifically. More of my life is comprised of ASD symptoms than not.

Then, a dr was baffled and sent me to another specialist who was the rudest person I ever met. He said I made eye contact. He said i did not have overt stims. He said I was downright "warm". Those were the three things he used to erase all the others. He was looking for low functioning and made that clear.

If my parents had been there or another MALE family member, I am sure it would have been a different outcome.

But it's confusing because on my medical chart is still says "Autism Diagnosis" AND they just sent a pamphlet to my mom to try to get her to send in spit because "Someone in your family with autism was seen by us in the last two years........"

He had a cold, this guy, and was coughing in my face. He was somewhere else. If diagnosing autism is at the whim of one guy who can be coughing his lungs out and distracted and bored with his work, we have a problem.

 

[Mattymatt]

I've been misdiagnosed as AD/HD all of my life when I never had any of those symptoms. It wasn't until the summer of 2014, that this diagnosis finally got corrected and recognized for what it is: autism. If your doctor sucks, fire him or her. A doctor that I cannot or do not trust is one that I will never see again and most likely leave a negative review of somewhere. On the other hand, one that I trust and like will get a glowing review.

 

[clg114]

One thing I have learned as I've matured is that doctors work for us and are not all-knowing. They seem to forget that aspect; we pay them for a service. If I encounter a doctor that I don't trust, I quickly dump them and find another.

This is very true and not all are doctors are even familiar ASD, much less qualified to diagnose it. It is important to see the right kind of doctor for the condition you have. A doctor with experience with ASD will be more likely to give you a correct diagnosis.

 

[Autistamatic]

Very true what was said above regarding medical knowledge of ASD. I know the impression in the US is that the powers that be are a lot more clued up regarding ASD in the UK, and there may well be truth in that, but there's a surprising amount of ignorance.
I attend a group surgery which has about 6 permanent GPs and a few regular locums. A couple of them are really knowledgeable about ASD, some know very little and I'm told that one, who I've not seen personally, believes only in severe "Kanner type" autism.

 

[Renzler]

Well I can answer you right now. You feel, think and act differently because you are a conscious being and have your own distinct personality.

Now that that's answered, you need to figure out what it is you need.

For example, are you looking for;

• Validation and comfort. For someone to tell you that you just have a medical condition and that it's all going to be okay.
• A cure. For someone to tell you that with some drugs you can be exactly like everyone else
• A place to belong. For someone to tell you that you fit neatly into a category of personality disorders and that there are others like you.
• An excuse. For someone to tell you that you offend people but can't help it.
• An explanation. For someone to explain how your brain works.
• Benefits. For someone to offer therapy or someone to talk to.
• Attention. For your family and friends to go "oooh so that's why you're so different" and hug you and suddenly accept you for who you are.

Once you figure out exactly what you are looking for, you can stop chasing your tail and go get it.

Hi Bella Pines!

I think I may have been to vague with that statement about feeling, thinking and acting differently.

By feeling, thinking and acting differently I think I mean my lack of emotional response and understanding. Quite often people will get mad at me because I can't seem to understand the emotional aspect of a story and I look at everything literally for what it is. I've only had two close friends since I was in high school who happen to be brothers and they didn't talk to me for a year because they said "I have no filter" and "I say things that piss people off".

I think I'm looking for:

• An explanation. For someone to explain how my brain works.
  • and to understand why my panic attacks are coming back
• Understanding from people around me. I feel like I can't be myself around people because they don't understand me and will leave because of it.

What I don't want:

• A cure. For someone to tell you that with some drugs you can be exactly like everyone else
  • I like the way I am, and I just want everyone to be ok with it too
• An excuse. For someone to tell you that you offend people but can't help it.
  • I don't want an excuse, I prefer to take responsibility for my actions
• Attention. For your family and friends to go "oooh so that's why you're so different" and hug you and suddenly accept you for who you are.
  • I don't like attention or hugs, I just want understanding

What country are you in @Renzler ? If we know that then any specific advice on getting a diagnosis might be easier. Other than that - as said above, knowing for certain your reasons for wanting this diagnosis might help you to focus your efforts.

Hi Autistamatic!

I live in Ontario Canada,

Please see above for my reasons for wanting this diagnosis

Thank You!

 

[Autistamatic]

Those sound like pretty healthy reasons for wanting to know. I ask about which country simply because this forum has a very international membership so people from your own region can help you find help better than those of us living in countries with very different medical systems. The UK & US probably couldn't be farther apart in their healthcare systems, for example.

 

[Theta.G]

https://www.psychologytoday.com
Look for a psychologist who specializes in autism / aspergers and see them. They should take it more seriously than others.

Autism isn't really something they can give you drugs for... but bi-polar is. If some of the people you saw were psychiatrists and not psychologists well... you can see the conflict of interest.

It's pathetic how some in the healthcare industry lump anyone who uses google in the same box. It shows lack of critical thought on their part. Came across 2 people already who made the same assumptions about those who use search engines.

Ya... there are some people who uses a search engine to look up symptoms and go into hypochondriac mode. Thinking they have the answers in 1 day of searching. Unaware of highly tailored and directed search results through SEO (Search Engine Optimization). However... There are also people who know how to utilize it properly and spend weeks, months or years researching and studying their condition using a search engine. Yet, they assume one to be the former.

 

[Bella Pines]

I think I'm looking for:

• An explanation. For someone to explain how my brain works.
  • and to understand why my panic attacks are coming back
• Understanding from people around me. I feel like I can't be myself around people because they don't understand me and will leave because of it.

Yeah agreed with above, these are healthy and productive reasons for wanting to know.

I have absolutely no medical or psychiatric training but am happy to offer up a deluxe package, stranger on the internet, diagnosis . There is a high chance you have Aspergers. It can be misdiagnosed. The lack of social acceptance, taking in lots of information and constant overthinking often leads to depression, shutdowns, meltdowns and panic attacks.

There might be something else going on, often several conditions can work in tandem, but one disorder at a time.

So aspies often have neutral expressions, speak in monotone with some "forced" tone and facial expression. We are supremely logical and don't see grey. Everything is black and white, right or wrong, good or bad. We don't have many, if any friends but are perfectly capable of being fun and friendly for brief periods. We have interests that we need to learn everything about and enjoy talking about. Small talk is pointless.

My panic attacks come on when I'm "peopled out". I get cold sweats and tachycardia. I don't do meds, so I take regular alone time and actively discourage friends.

I have a close family who accept me for me, but a diagnosis won't help you here. Only time and communication will solve this problem. Even after 20 years my neurotypical husband is no closer to understanding how my brain works. He accepts me now, he can predict me, we laugh together at some of the things I do, but he will never understand me anymore than I will understand someone who makes decisions based off emotion.

So as far as diagnosis is concerned, it's unlikely to help where you want it to help. A diagnosis will be based on the EQ and AQ test and won't tell you any more about yourself than you already know. A diagnosis won't help people understand or accept you. There's no harm in a diagnosis, but you really need to go in armed with knowledge and chase down a diagnosis, as opposed to looking for answers.

The only place to really get answers about you is you. Ask questions in forums, learn how not to piss people off, one conversation at a time, learn the scripts to engage filters. But most importantly, learn to accept and appreciate yourself. Only then will others be able to accept and appreciate you, ASD certified or not.