Doctors don’t believe me

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Hey everyone, I’m hoping that I can get a little closure on everything I am feeling. I feel as though a huge weight has been lifted off my shoulders, but also I am doubting myself because I haven’t been given the time of day with my doctors. I cannot switch drs because my parents are unsupportive of my mental health and I have chosen to not tell them I am pursuing a diagnosis until I can get a solid answer and because of COVID I do not have a job so I cannot seek anything privately.

I am a 20 year old female and I have suspected I am autistic for the past year now. I have always been different since I was a kid and I never fit in anywhere. I also think I am very self aware and so when I talk about my experience it seems as though I am making things up. I currently speak to a social worker biweekly about anxiety, but I have not found that this to be very helpful as anxiety is not a huge concern of mine. Some of the techniques such as labelling emotions have also proven to be nearly impossible for me so I feel like there are things that might work better.

Growing up I had 1 or 2 close friends for a few years at a time but they were constantly rotating and I was never a part of the social group that girls and teenagers like to be in. Most of my friends were family friends and those are the only ones I have been able to keep around, although I do not talk to or see them very often. I was always quiet and observant and super nervous about standing out or getting in trouble. I took on the traits of people who I looked up to and I hoped that this would make me friends. People talked nicely to me for the most part so I never quite understood why I had such a hard time making friends. I was bullied for being a bit of an outcast and I rotated between trying hard to fit in and being discouraged from the comments about me being different. I have been told I am manipulative and rude when I have no intentions to be, things just seem to come of differently than I expect.

Now that I am older I can recognize that it is not normal to need a schedule by the minute in order to function for the day (if I do not write my plans down in my calendar I forget or choose not to do them and I get very frustrated when these plans change). I also plan scripts in my head for how conversations are supposed to go and when they don’t go to plan I take long pauses to rewrite my script and figure out how to continue the conversation. I ask a lot of questions and sometimes they come off as dumb questions or something I should know but I’m just trying to navigate this world and learn how people work which is a huge part of my interests in anatomy and psychology which I am currently pursuing in school. I don’t always have appropriate reactions to things that happen (smiling when I hear of the passing of a friend) and I get overly excited and have a hard time telling when people are no longer interested in what I am talking about. I also don’t show any outward expression of excitement because it feels too fake to me and I feel like people will know that it is not sincere. I don’t always get social cues and I have a hard time telling how people are going to react.

It wasn’t until COVID and quarantine that my life deteriorated and I decided to seek help. So initially I was told it’s just social anxiety and depression (which I have thought for my whole life up until recently), but then I came across Hannah Gadsby on Netflix and I decided to look further into it and now I am absolutely positive that this is the correct diagnosis, but I keep being dismissed by doctors because I don’t look it. I have been told that it would have been caught when I was younger but I was always bright and never struggled in school aside from being the shy lonely kid who never really had any friends. Every single meet the teacher interview I went to they said “she is a bright little girl, but she needs to participate more and stop fidgeting (I tapped my foot a lot and fidgeted with my hands a lot and so since I have begun sitting on my hands in order to keep them still). I rotated between social groups from elementary through high school. I have flourished in University because it is new people everyday and so I don’t feel pressured to interact, often sitting alone or with one friend I have made in my program. I also have a boyfriend which they said is a sign that it’s probably not Autism. He is very supportive of me and he is the only one I have told about my suspicion, but I have been a huge handful lately with my mood all over the place and breakdowns almost every day. I want to be myself around him but I’m still trying to figure out who I am and so I am inconsistent which has caused him to take a step back. I am overly clingy which I’m not sure is normal, but he is the only person I have ever been so concerned about losing.

This has caused a huge strain on my relationships with my family and my boyfriend and I am getting desperate for answers.

Has any one else had this experience? Should I listen to my doctors and accept that I’m probably wrong? I have finally gotten an appt with a psychiatrist for the end of August/early September (which I am so grateful for) however after looking him up he has a lot of negative reviews on not caring and taking people seriously. He is also working out of my dr office so I am concerned she will talk to him and basically give him the run down that she doesn’t think so although I’ve only visited my dr a handful of times throughout my life. I am getting so discouraged and I’m not so sure that this is worth pursuing.

Im sorry this was a long post but I am open to any stories, comments, advice, questions, and suggestions you can give me.

Are you looking for a doctor who will give you a correct diagnosis, or are you looking for a doctor who will merely confirm the "diagnosis" you have given yourself?

You should see the psychiatrist and ask for a neuropsychological evaluation.

Make sure you go to the psychiatrist with solid proof that you might be autistic. Don't tell her vague things like "I never fit in" because that applies to a lot of people who aren't autistic. Look up all the symptoms of autism and write down how you fit them. Your fidgeting, for example, is an example of repetitive behavior, and your need for detailed schedules is an example of restricted behavior. If you can get records from school, like something that shows the teachers' comments about fidgeting, bring that too.

Also mention that your anxiety therapy isn't helping you, and be sure to be your most authentic self. Don't sit on your hands or do anything else to appear "normal."

If that doesn't work, you might try going back to your doctor and asking to be referred to a psychologist for a neuropsychological evaluation for your anxiety. Since talking with the social worker isn't helping and you don't feel very anxious, you can say that you don't think anxiety is the correct diagnosis, and that you want to know for sure what is happening with you and get correct treatment. If you get that evaluation, you can tell the psychologist that you suspect autism and share all the things I mentioned in the concerning the psychiatrist.

The stress covid stuff. Has been very hard on everyone . Would hope you might find a worthwhile doctor whom might specialize in autism , otherwise might be tough to get. Accurate diagnosis . In my early years doctors only would diagnoses the absolutely worst most obvious cases of autism . Am believing this is still true of doctors whom do not specialize in this field.even today .Nueropsyche evaluation sounds like a very good suggestion.

Look for research studies on autism.

You might be able to get an autism assessment for free for being a participant in the study.

You got a referral. I would take advantage of this.

It’s not definite that the psychiatrist will be “biased”—especially if he/she is good and objective.

Don’t come “overprepared.” Just “be yourself.”

Diagnosis or not, there is no useful standard treatment for adult autistics. What helped me was learning "autistic" terms to describe my feelings, with "sensory overload" being the most important one.
My "social anxiety" turned out to be actually a "social exhaustion" - lack of energy for any more interactions with humans - that gets better with sufficient rest.
I don't know if you relate. Anyway, welcome!

Autism in females is often overlooked or misdiagnosed, because autism is expressed differently in females than in males.

The diagnostic criteria of autism as described and understood by most doctors including specialists has for decades been a description of autism in males.

Google "autism in women" or similar and you will find more information on this and will be more prepared.

If you have done well in school and in fact have autism, you likely are so good at masking that many doctors will not pick it up.

Good luck.

and Welcome