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Misdiagnosis is common in Adults?

D'Andre

Well-Known Member
OK, now I'm kind of mad. I have very little trust in mental health evaluations anyways. They see you one time and make decisions that affect your in tire life. Not to mention they charge you all this money and make you wait up to years. What if I'm misdiagnosed? How am I supposed to be OK still living with what I truly believe is ASD, and you get to go on with your life(drs). I could be denied resources, miss out on knowing something very important about myself. It makes me so angry for something like this to be so out of reach, then you get it and the examiner might be incompetent. Where's the justice? From my research, in southern cal, its so hard to find support for adults who just want to know, but struggle financially. Its depressing. If anyone has anything I can read please let me know. I need a lil hope right now. I'm trying to find a new job and settle. Dealing with toxic people and spending more and more time to myself to find relief. Thank God for this forum!
 

Gerontius

Well-Known Member
V.I.P Member
It's probably a better idea to go in more than once, and get an actual diagnosis that way.
Secondly, speak to the doctor about your concern that the diagnosis may affect your prospects of a job; I was diagnosed by a doctor I was seeing but due to the potential damages of a diagnosis in the ableist culture of the Deep South, he gave me no paper diagnosis--Which is actually rather nice.

Good luck.
 

Silhouette Mirage

S̷͕̲̔Ḷ̸̽̌İ̶̞M̸̲͆Ë̶̗̠
V.I.P Member
I feel like that's how it is almost everywhere, unfortunately. Getting another opinion can help, if that's at all possible. It's definitely not easy to get a diagnosis as an adult by anyone who isn't properly trained. Have you tried to get in touch with an ASD specialist? That's where I had the most luck and the best answers.
 

tree

Blue/Green
Staff member
V.I.P Member
@D'Andre

What is "midiagnosis"?

It's not a word that I know.

Is it possible you have left a letter out in the
word in the title? Maybe an "S"?

That is a word I know: misdiagnosis.
But not 'midiagnosis.'
 

Neonatal RRT

Well-Known Member
V.I.P Member
Just a tip that worked with me. Do your research on autism first. You can pull up the DSM on-line and go down the list of diagnostic criteria. Does any of it apply? Now, here is where it gets a bit nebulous,...does it apply some of the time, or most of the time? Literally everyone can recall and "event" or "moment" in their lives when they experienced an "autistic moment",...and this is where "autism deniers" can loose context and perspective and be quite minimizing in their comments towards us. Sure, most neurotypicals are likely to have experienced a handful of "autistic moments" throughout their lives,...but it's the 100's of little things,...sometimes big things,...that are ever present and no matter how much time has gone by,...those things are still there. It's effecting our ability to keep a job, maintain a loving relationship, making us anxious, stressed, depressed,...the sensory issues,...all those things that culminate together and create this picture of a person with autism.

YouTube has a number of autistic video bloggers that put out regular videos on how autism manifests itself in daily life. I found several of them helpful. "The Aspie World" series often gets right to the point,...I like the way he does his videos. There are TED talks. There are scientific lectures. I am NOT a fan of Mark Hutton,...to me, he comes off as a neurotypical psychologist with a lot of "expert advice",...mainly directed towards neurotypical partners of autistics,...but clearly doesn't have the perspective to understand autism and it comes off as "minimizing" and "belittling",...and frankly, inaccurate, in the way he presents things.

The other part,...and this is a big one,...a psychologist will want to do an interview with you,...mostly to assess your reasons for being in the office in the first place, but secondly, he/she will be a trained observer, noting mood, how you dress, how you hold yourself, your communication style, reciprocity, etc. BEFORE you go in,...take the time,...sometimes weeks or months beforehand,...and start making your "You might be autistic if...." list. I wrote down an itemized list of all the things I am experiencing, all the things that I have experienced, my sensory issues, how I think, how I interact with people,...as much as I thought applied to my possibly being autistic. It took me a long time,...a 172 things. Typed it out onto a Word file and then printed it out for the psychologist on my first appointment. The reason: If you are truly autistic,...and being interviewed, and being asked pointed questions, face-to-face, especially about how you are feeling, etc....you might NOT be able to express it verbally in any sort of meaningful manner. This is an autistic trait. Help yourself out,...help the psychologist out.

Furthermore,...if you are on certain, as needed "mood enhancing" medications or supplements, nootropic "brain function enhancing" supplements,...even caffeine,...DO NOT take them prior to your testing. You have to drop your masking,...in some cases, feel like crap prior to walking in for your interview and testing,...literally, be "au natural" even if you feel your worst. So,...all my testing scores,...everything, was me, at my literal worst.

Ask about cognitive performance testing,...this is most helpful because most of the time you can't "fake" autistic cognitive performance testing,...it is what it is. Of course, they will likely have you do the usual written AQ testing, RAADS, etc. It is also important to deal with an expert in adult autism,...children and adults, due to maturity, due to psychological changes over time, due to brain development,...will present differently and need to be assessed differently. Remember this as well when looking at scientific literature,...there is quite a bit on children,...and children can manifest their autism differently than adults,...so whenever possible, look at the study population and make sure it is speaking of adults. Perspective and context matters.
 
Last edited:

D'Andre

Well-Known Member
It's probably a better idea to go in more than once, and get an actual diagnosis that way.
Secondly, speak to the doctor about your concern that the diagnosis may affect your prospects of a job; I was diagnosed by a doctor I was seeing but due to the potential damages of a diagnosis in the ableist culture of the Deep South, he gave me no paper diagnosis--Which is actually rather nice.

Good luck.
Excellent advice
 

D'Andre

Well-Known Member
@D'Andre

What is "midiagnosis"?

It's not a word that I know.

Is it possible you have left a letter out in the
word in the title? Maybe an "S"?

That is a word I know: misdiagnosis.
But not 'midiagnosis.'
Absolutely. I misspelled it....or "impelled" it lol
Thank you!
 

Judge

Well-Known Member
V.I.P Member
You mean misdiagnosis is common in the professional medical community.

Even when you set your sights on being diagnosed by a board certified psychiatrist or neurologist there are no promises whether one is an adult or not. Just more doctors to seek out until they properly and officially recognize us for who and what we are.
 

D'Andre

Well-Known Member
I feel like that's how it is almost everywhere, unfortunately. Getting another opinion can help, if that's at all possible. It's definitely not easy to get a diagnosis as an adult by anyone who isn't properly trained. Have you tried to get in touch with an ASD specialist? That's where I had the most luck and the best answers.
I paid a lot of money to a Dr that said he could diagnose me. He ran through some questions, Saudi he definitely believes I have autism, refused to include it in his report and took my money. He only diagnosed me with social anxiety that even my mental health providers didn't really think was correct. I'll research ASD specialists and let them know "I'm watching you" lol. No lazy inexperienced evaluations for me. See, I knew talking on here would help me
 

D'Andre

Well-Known Member
You mean misdiagnosis is common in the professional medical community.

Even when you set your sights on being diagnosed by a board certified psychiatrist or neurologist there are no promises. Just more doctors to seek out until they properly and officially recognize us for who and what we are.
If it wasn't so expensive....they really make it difficult. But I'll research any assistance.
 

Judge

Well-Known Member
V.I.P Member
If it wasn't so expensive....they really make it difficult. But I'll research any assistance.
Expensive and also it depends on whatever society one lives in. Where both formal medical records and stigmatization can potentially follow you around in various unintended ways.

Or to be more blunt, it's better to be autistic in some countries than others.
 

D'Andre

Well-Known Member
Just a tip that worked with me. Do your research on autism first. You can pull up the DSM on-line and go down the list of diagnostic criteria. Does any of it apply? Now, here is where it gets a bit nebulous,...does it apply some of the time, or most of the time? Literally everyone can recall and "event" or "moment" in their lives when they experienced an "autistic moment",...and this is where "autism deniers" can loose context and perspective and be quite minimizing in their comments towards us. Sure, most neurotypicals are likely to have experienced a handful of "autistic moments" throughout their lives,...but it's the 100's of little things,...sometimes big things,...that are ever present and no matter how much time has gone by,...those things are still there. It's effecting our ability to keep a job, maintain a loving relationship, making us anxious, stressed, depressed,...the sensory issues,...all those things that culminate together and create this picture of a person with autism.

YouTube has a number of autistic video bloggers that put out regular videos on how autism manifests itself in daily life. I found several of them helpful. "The Aspie World" series often gets right to the point,...I like the way he does his videos. There are TED talks. There are scientific lectures. I am NOT a fan of Mark Hutton,...to me, he comes off as a neurotypical psychologist with a lot of "expert advice",...mainly directed towards neurotypical partners of autistics,...but clearly doesn't have the perspective to understand autism and it comes off as "minimizing" and "belittling",...and frankly, inaccurate, in the way he presents things.

The other part,...and this is a big one,...a psychologist will want to do an interview with you,...mostly to assess your reasons for being in the office in the first place, but secondly, he/she will be a trained observer, noting mood, how you dress, how you hold yourself, your communication style, reciprocity, etc. BEFORE you go in,...take the time,...sometimes weeks or months beforehand,...and start making your "You might be autistic if...." list. I wrote down an itemized list of all the things I am experiencing, all the things that I have experienced, my sensory issues, how I think, how I interact with people,...as much as I thought applied to my possibly being autistic. It took me a long time,...a 172 things. Typed it out onto a Word file and then printed it out for the psychologist on my first appointment. The reason: If you are truly autistic,...and being interviewed, and being asked pointed questions, face-to-face, especially about how you are feeling, etc....you might NOT be able to express it verbally in any sort of meaningful manner. This is an autistic trait. Help yourself out,...help the psychologist out.

Furthermore,...if you are on certain, as needed "mood enhancing" medications or supplements, nootropic "brain function enhancing" supplements,...even caffeine,...DO NOT take them prior to your testing. You have to drop your masking,...in some cases, feel like crap prior to walking in for your interview and testing,...literally, be "au natural" even if you feel your worst. So,...all my testing scores,...everything, was me, at my literal worst.

Ask about cognitive performance testing,...this is most helpful because most of the time you can't "fake" autistic cognitive performance testing,...it is what it is. Of course, they will likely have you do the usual written AQ testing, RAADS, etc. It is also important to deal with an expert in adult autism,...children and adults, due to maturity, due to psychological changes over time, due to brain development,...will present differently and need to be assessed differently. Remember this as well when looking at scientific literature,...there is quite a bit on children,...and children can manifest their autism differently than adults,...so whenever possible, look at the study population and make sure it is speaking of adults. Perspective and context matters.
Absolute gold. Thank you. And I agree about Aspire world. I'll watch more of his. Thanks so much.
 

Suzanne

Well-Known Member
V.I.P Member
I went to a psychiastic with a specific goal in mind and that was, to get started on the road for a diagnosis of ASD. It did take a while, though, because he misdiagnosed me with depression; but wierdly enough, despite not knowing that I wanted to be tested for ASD, he gave me medicine to calm my anger, which is generally given for those on the autism spectrum lol

I found quickly, that you have to have a goal in mind, otherwise, they will take over your thinking process and it was my husband who asked for me to be tested and I was sent to a specialist and from there, an "expert in autism" and received my diagnosis.

The diagnosis has settled my mind and although I tried to find a reason to go back to the psychiastic, I found that I could not, because all they want to do is push pills on one, and I hate that.

Yes, they are full of injustice; but it does seem that free of paying, one gets similar treatment; unless, of course you are rich.
 

Atrapa Almas

70% INTJ + 30% ASPIE = 100% HUMAN
V.I.P Member
@D'Andre

What is "midiagnosis"?

It's not a word that I know.

Is it possible you have left a letter out in the
word in the title? Maybe an "S"?

That is a word I know: misdiagnosis.
But not 'midiagnosis.'
"Mi Diagnosis" do perfect sense in Spanish. It means My Diagnosis.

To the OP, misdiagnosis is less frecuent with good professionals that may be recomended by the autistic community. I know a few of them, but they are Spanish.
 

D'Andre

Well-Known Member
ok so...just want some feedback on this: i'm currently in a very paniced state. I'm overwhelmed but many things like:
heat, plumbing, meds, getting diagnosed, family, and confusion. I'm gonna get through it. i just need to know if this has a name and if it's relatable to any of you.
*my speech has hit a place where only narrow lips and monotone is tolerable
*im pacing, staring into space, fidgeting more than usual.
*performing rituals and repetitive self soothing
*i'm having fits of rage periodically
* totally avoidant of people. i don't even want to text
*feels like ants are on me
there's other stuff but i just want to know if this could be related to asd. again, i'm processing this the best i can without getting hysterical, but i can't figure my life out because i'm just very confused. and i'm trying not to look at everything as asd...but if it is asd related, i'd like to know. any type of "Answers" about me seem trivial. please forgive me if i'm saying the same stuff over and over, i'm really interested in education on this and it's taking time to connect the dots. i think life is beautiful, i'm just unable to manage the overwhelming "stimulation?" you guys are the best. always keeping it real so i know you'll give me support and resources.
 

tree

Blue/Green
Staff member
V.I.P Member
Some of those feelings could be related to your
blood sugar levels.

Before I changed what I ate, I used to be alarmed
that bugs were crawling on me. I don't mean I saw
bugs. It felt like bugs were walking on me, maybe
biting me.

That was a blood sugar problem.

Also, rage/anger feelings when glucose dropped.
 

D'Andre

Well-Known Member
let me reiterate, some ,aside from rage, things are not hurting me, i'm getting a relief from them. for years i took them as a negative reaction. i feel like my body and mind are learning to accept this "reset" to deal with stress and the demands of the day. i'm so used to having to defend myself, it's natural for me to add as much context as i can. i'm in a heightened state of pressure. i feel like i was just pushed on stage with no lines to perform in a play. and another thing (so glad i realized this) i'm also so conscious of disqualifying my belonging here. i'm afraid this bit of community will be stripped away. and i'm so accustomed to masking, that there's a war between letting myself go or the need to not feel like i'm asking for asd. i have family who are notorious from knocking down serious mental health concerns by saying they "want" said disorder. so hard to trust people.
 

D'Andre

Well-Known Member
Some of those feelings could be related to your
blood sugar levels.

Before I changed what I ate, I used to be alarmed
that bugs were crawling on me. I don't mean I saw
bugs. It felt like bugs were walking on me, maybe
biting me.

That was a blood sugar problem.

Also, rage/anger feelings when glucose dropped.
i have changed my eating a lot (lost about 40 lbs....but, i've had a lot of so called "healthy" snacks with high sugar, so that's really good to know. i'll monitor that much better!
 

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