You poor girl! I can see your anxiety and difficulty processing or putting things in words. I'm starting this process now at 53, after finding girls with autism on UA-cam that were like me at 51. I took my Asperger test results with me (very high) and have been referred for the next step. We know ourselves and our struggles better than anyone else and we have the right to ask for appropriate help. ❤ While it is to our credit how hard we've worked to mimic and fit in and try to function, at the same time we have been struggling all along and hiding it. I just "disappear" for a couple days and hide under the covers to recover from exhaustion and overload. Then I feel guilty, like I "should" be able to do more, and get very discouraged.
I'm at this point...62 yrs, struggling and failing all my life and yet testing as a genius hahaha...what a stupid type of genius this is. Anyway my primary MD referred me after only a few brief questions and strong encouragement. I feel grateful for that because clearly not everyone has that initial experience.
I just found out today that I can skip asking my primary care doctor for a referral. I am happy because I don't think it would have gone well. I have been drug tested in the past. It is so annoying when you know you are clean.
I feel like crying. This is so awful. The medical community is unbelievably ignorant not only about autism, but especially adult autistics and like you said being a female on the Spectrum.
absolutly agree. I'm currently struggling with this point because my experiences with doctors has been so bad (especially as a woman) in the past couple months regarding some physical health related problems until I felt anxious to go to a doctor even though I needed to. So I don't feel like I can put up with their patronizing treatment again anytime soon but I would also really like to know, if my feeling to be on the spectrum is right. I live in Germany and general doctors and even psychologists are often very old school here and it feels like they never really updated their knowledge after graduating. I absolutely don't feel like I could bring this topic up with any doctor or specialist I have talked to ever.
Streets0fLondon There is one practitioner who does evaluations online from Australia, and she has a sliding fee scale....so if you dont have a lot of money you won't have to pay a lot. She is Tania A. Marshall, and she is on Facebook....she is the woman who wrote some of the first books on female autism. There are others aroind the world who do this online as well
@@ksthoughtpalace3042 thank you so much for suggesting this! I have seen her name before when I saw book recommendations, didn’t know there was a possibility to do this online and also without having crazy amounts of money. This is really helpful, thank you!
Streets0fLondon When you try to get ahold of her, be persistent...she is an Aspie herself. She took so long to get back to me I had already given up. And of course keep looking for other online practitioners. I finally got my diagnosis in person by a neuropsychologist who specialized in children, but did evaluations for adults when she had time. Her office also took my insurance.
yup. I have pretty much given up on getting any kind of care tbh. I have been diagnosed with everything. bipolar. dissociative disorder. BPD. etc. Now I am frankly terrified to go talk to mental health professionals at all.
As soon as you said they wanted to order blood and urine tests, I thought, 'WTF! They think she's on drugs?!" I got lucky in that I have a really good psychologist that I've been seeing for depression and anxiety, so when I realized and researched for myself that I might have Aspergers and brought it up with him, he was like, 'Well, I don't know a ton about the subject, but I'll research and we can discuss it next time we meet.' When I showed him a list of female traits, I could tell he recognized some of them in me since I'd been seeing him for a while. On the other hand, I have had other physical health issues where I've been met with skepticism and patronizing comments. It's so irritating. I'm sorry you had such a negative and frustrating experience.
It’s so sad how difficult it is to get a diagnosis as an adult. I just got a referral from my primary doctor. Good thing is coronavirus time, so we just talked on the phone. He was gracious about giving me a referral and after looking at my history of being diagnosed for anxiety and other disorders he agreed that yes, I might be right. The reason I’m glad we talked on the phone is cause I had major shaky hands when I was talking to him! Now hopefully I can have my assessment if the world does not end!😷😂
OMG you had me reliving several episodes in my life where I felt I was cornered and had no way out... that panic and frustration with not being able to easily come up with coherent "answers" to all the "whys" and "hows" that come with people confronting you on YOUR reality. Those people just do not know what it's like, yet do not have the patience to at least try. That said, I am glad you got through all of it. Good for you!
Thank you for sharing. This really triggered me about my attempts to advocate for myself and feeling silenced and discredited and patronized. It takes bravery to go for help. ❤️ Also, I totally relate to having been doubted and being defensive from the start! Next time I ask about Autism, I will take my husband, or my mother, because of your advice. 🙏
the doctor's behaviour unbelievable! when you imagine someone finally makes themselves to open up about something so personal and teterrifiyng and they treat them like this.. Im 26y/o female, I went to see my GP a few days ago, I was so scared. I thought she wouldnt believe me, but when i nervously told her i suspect i could have Aspergers and attention deficit disorder, she was really understanding, she only asked me to tell her some examples i was struggling with (of course i had a blank mind too and it was hard to come up with something right in that moment). she wrote me the refferal right away and told me to hold on. thank god for her
I went to my doctor yesterday about this and had as opposite of an experience as you did. My doctor and her 2 nurses work as a team and could not have been nicer about why I was there. I got a referral to a neuropsychologist and shit tons of reassurance. I also had notes and did take them out but didn't need them because of how understanding they were of me.
When i was a kid my mother had to bring me to a psychiatrist because of school issues. He talked to me then to my mother and me together and i remember him saying i had a "Mild form of autism". My mother refused to accept it,saying i was too smart to be autistic and she didn't want that diagnosis to hold me back,insisting i was shy and would grow out of it. Doc said i would be this way my whole life and there was no cure, but he pulled out a book and looked through it, eventually saying that "Schizoid personality disorder" had a lot of overlapping criteria and less stigma. So i don't know if i ever got an official diagnosis, but after that the school put me in a special class and just let me read all day and not have to talk to anyone. Was never brought to any other psychiatrists since then so whatever diagnosis i had disappeared i imagine, since my childhood records were destroyed 11 years ago. Not sure what to do now,the idea of going to a psychologist to get a diagnosis fills me with dread, since even normal doctors rarely believe me about anything.
That's rough. Seems like you may or may not have a diagnosed floating around somewhere, especially if it got you put in another class. History of IEP or special ed classes can help establish a history or "proof" of something worth looking at for some professionals. I am concerned that a psychologist would be potentially willing to change your diagnosis purely to placate a parent, but it doesnt necessarily surprise me. Hope you're able to find the answers you need!
I'm sorry you went through that. I can totally relate. I think Western medicine in general is still very uneducated about ASD in adult women and that there's a spectrum. I went to see a therapist recently within my insurance network to seek an asd diagnosis and the therapist was nice but totally ignorant about autism and she just went by a checklist on her computer for full blown non-functioning autism. She didn't hear me out about the subject and about my symptoms and just said i had generalized anxiety disorder and to go read some self help books. I was so angry & hurt after i left because it feels like nobody believes me or understands me. This has been a life long struggle. Its more than just anxiety, i know it, but nobody in our society cares or thinks its an issue. Its such an isolating feeling. I am seeking a new therapist. Wish me luck. :(
I know it must have been hard to relive this when speaking about it, but I'm really grateful that you did. Hearing your struggle with articulating and not being able to think and not connecting with others easily and people just looking at you like there's something wrong with you because you just can't get out your thoughts...that happens to me so much and I just end up in tears because they think it's silly its so hard for me. I felt like you were speaking my thoughts. Seeing your video gives me motivation to be brave and seek out a diagnosis. Thank you
Really sorry to hear that, Stephanie. But not surprised. I'm going through the same thing at 63. Sadly, your experience with adult diagnosis is the norm. Hopefully we will both live long enough for that to change.
Thank you so much for sharing the reality & truth of this traumatic experience. I know that's not all you want us to take away from this, but I've recently been trying with 2 primary care doctors to get a good referral, and I'm getting the same kind of stupid pushback. Both have asked me "What will a diagnosis change?" or "What will a diagnosis DO for you?" followed by the 2nd one actively trying to dissuade me from pursuing this line of testing EVEN BEFORE I'VE HAD ONE TEST. She's already told me to be prepared to "give up" if I do actually manage to get tested & I'm found by one person to not be on the spectrum. (When we all have read multiple ASD folks' stories about multiple misdiagnoses & struggles, before an accurate diagnosis. And stories about dealing with "specialists" who actually didn't know what they were doing, especially with adult women on the spectrum.) It's maddening. But you being here & bravely telling this story, and obviously not having given up, is going to help give me strength to keep pressing on. The current doctor actually managed to wrangle out of me (before the first psych or specialist appt) an "I guess I'll give up if it's negative" but DAMMIT FUCK NO I'M NOT GOING TO DO THAT! >:/
So glad to hear that you're going to keep pushing forward for someone who hopefully knows what they're talking about to be able to see you instead of the people you've been dealing with. It sucks that you've had to experience all this, but I hope the best outcome for you!
ANNNND thank you for posting this. I think this is the first one of your videos I've watched and it helps tremendously. I've been talking to my Dr and Counselor for a year trying to figure out why I've always struggled so much [and after a really bad melt down - like maybe life stopping] - and with no one believing me... I'm male, so don't face that prejudice, but had gotten by, as people thought, for 63 years with no one listening to the struggle... The Dr wanted to get a referral, but agreed with the Psych who said it would be a terrible uphill battle... he has been helping me to remember and reapply all the tricks I had used to do "normal life," so, yeah, I can't express it any better than this, but, thank you! The diagnosis would explain everything since I relate extremely to everything people say they experience... BUT, the techniques to more than get by are the same even without it. Good grief, hope you could read that!
You are so brave in that you kept trying to find help even though people kept rejecting you, and I'm so sorry you had to go through that ridiculous doctors appointment. I was stressed out just watching this and could feel you being stressed just talking about it again. So thanks for making the video despite that.
I've always known I was different somehow but conveying why I felt that way was always hard for me. I started suspecting I was on the spectrum when I was back in college and I realized that the only ones I ever felt like really understood me were all on the Autism spectrum somewhere. Flash forward several years and me trying to get help through counseling. My mom "loses" the appointment because she has it in her mind I only want to talk about how bad she is for some reason and I'm like I have other things to worry about now. This happened to me three different times. Last time I asked her about it and she was just like "Oh you still need that?" Finally I had enough. I had a new appointment with a Medical Doctor and I had mom wait for me in the main waiting lounge area because I had already made up my mind on what I was going to do. I was honest on the questions about depression and anxiety and when he came in I told him I wanted to see the counselor but I needed the number myself and I didn't tell my mom about it at first. He referred me to a counselor and then I had to deal with a new problem. She instantly wanted me to take drugs for the depression and anxiety and I was like I don't need drugs I need a way to cope with life. Several sessions later she really feels like I need to see a psychiatrist and I'm finally ready to give it a try. Two sessions later she finally actually refers me. I go in and he ask me all kinds of questions and then he basically explains to me that even though it's too early to tell for sure, I do have some signs that would at least suggest I most likely am on the Autism spectrum. Finally some validation. How old am I? I'm 29 and I'll be 30 in April. Can't help but feel like my life would be so much better if I found out this back when I was 9 and if my mom and I would actually have a good relationship now if she had known sooner. I never know what to say to her. I'm always scared I'm just going to tick her off and then she'll just victimize herself again to where there's zero point in me even trying to talk to her about certain stuff because she can't just own it without victimizing herself. It's a problem. Also sorry this comment is so long....just....really going through a hard time right now.
I cannot describe to you how useful this video was to me and how much comfort it brings not to feel so alone. When I started watching I hoped that you had a better experience than I did. I was told by multiple people not to tell my primary care doctor that I thought I had ASD. But my appointment went very terribly wrong and I nearly had a meltdown. I couldn't communicate with the doctor or his staff and the only thing they would diagnose me with was depression. I nearly had a meltdown during the assessment because I could barely remember the questions long enough to answer them. The only thing I could grasp from my memory was my sensory processing issues and how they overwhelm and exhaust me. I couldn't articulate or figure out how to describe any of my other problems. It was the most useless appointment ever. Especially since I got bad (but well intentioned) advice from people I trust.
Quite an amazing story! I now look at my quite short path (at age 53) from "Hmm, ASD would explain a WHOLE lot" to my present position of being a week away from hearing the results of my ASD assessment as "holy moly, did I have it easy!"
Running into some of the same problems. It difficult to believe that there’s still this much misunderstanding among professionals! Really wish they would update the DMS to include specifics on adults and recognizing those that slip through the cracks because we’re too good at pretending we’re normal!
That is awful! I've been through several situations like that where I just shut down in the psychiatrist or therapists office when i was being "treated" for depression and anxiety. I can totally relate to having papers and evidence and everything ready but in the moment not having it in me to pull them out or say anything because of fear of being told I am wrong or being laughed at. It's extremely scary and discouraging and the opposite of what you'd expect. Lately, I've suspected I might actually have autism symptoms and I'm considering asking my doctor about it. I am pretty comfortable with my primary doctor now so hopefully it will be easier to bring it up to him.
I'm already 17 and suspected I have ASD last month so I went to my school psychologist ("social worker") and she told me that getting a diagnosis wouldn't change anything, like why would that matter, we just need to learn how to handle social things, having a diagnosis isn't important, etc. And I was like bitch wtf (I didn't tell her that) but that fucked me up. She also dismissed the diagnosis of the girl in the video I showed her saying "oh I don't think she has ASD, she can look the guy in the eye and she can wait for her turn to speak" (video from The Aspie World on YT). I even gave her a physical copy of the abstract of a research I found about women with ASD and how it's different with boys, and she completely ignored it. Idk anymore, I'm not diagnosed but I think I have anxiety and depression. Idk what to do.
Ugh that's so frustrating. I would imagine you would have to see someone else who doesnt have such a misunderstanding of autism. And imo it's very important to bring up concerns of anxiety and depression, though I'm not sure if this person is the best to try to go to about it considering their dismissive attitude. Perhaps your parents can find you someone in their insurance network or something? I know it would be more ideal to go through the school but clearly that's not going well
I'm so sorry your diagnosis was so awful. I was so lucky. Here in Calgary, AB, Canada, we have an MD who is on the spectrum and he did my diagnosis. You have been one of the best resources I go to. Keep up the fantastic work!
Thank you for sharing Getting an Autism Diagnosis video. My teen daughter and I are experiencing roadblocks trying to get her evaluated for Aspergers at Kaiser psychology dept. She was diagnosed with ADD in 3rd grade, later diagnosed with Anxiety and Depression, treated for gut and bowel problems for years, and now diagnosed with Social Anxiety cause she avoids communicating and social interactions in school. Kaiser doctors don't see ALL their previous diagnosis may be symptoms of Autism, therefore they refuse to evaluate her for Autism as I (mom) requested multiple times for her at different ages. Many psychologists may not understand symptoms that are not Classic Austim, especially for young girls who cannot articulate their daily struggles and assume mom is over-thinking daughter's symptoms. I cannot stop advocating for my daughter because Kaiser doctors might be wrong.
I was diagnosed at 6 (I'm male), and naturally 2 of my three best friends are autistic women. Both lack official diagnoses. One is actively seeking it. Autism never occurred to the other until I disclosed, and raised the possibility, and isn't actively seeking a dx, but she's the most autistic person I know. We've talked about the merits of diagnosis young or old. My dx led to ABA, so I consider my friends lucky for dodging that bullet, but I know it wasn't easy for them growing up knowing they were different and not knowing why. I also dated an autistic girl whose parents knew full well she was autistic, and were told to get her an official diagnosis, but refused because they knew it would lead to ABA and discrimination, so she was undiagnosed and didn't really know she was autistic. My ex is a very happy person-ABA would have broken her soul-so her parents made the right call. It's a shame it didn't work out, because they would have made great in-laws.
People are so annoying! They don’t know how to handle me. I would be terrified in that situation. That’s why I am going about it in a low key way even though it’s almost unbearable to not be more open about it. I found a therapist who specializes in Asperger’s syndrome and am being helped through the process. Trying to find diagnostic testing under my insurance.
I think some doctors need refresher courses. I am so sorry you went through that alone. Is it possible to dispute the insurance coverage? It could be medically necessary to rule out that issue. It should have been advised to you that is what it was for.
Yeah, I think more refresher training courses could help so many. I did dispute it, they tried to help me, but at the end of the day said they couldn't do anything about it.
i relate to this *so* hard. i'm too nervous to try and get a diagnosis, because i'm scared bullshit like this would happen. i am 21 and i never even suspected i might have autism until i started to relate to literally every autistic trait i happened to learn about. up until this year i was just assuming that i had anxiety, social phobia, depression, SPD, emotional repression/disconnect, inability to connect with people, and was a super stimmy and oversensitive person all at once for no reason. on top of that, i would get meltdowns but i though they were random waves of severe anxiety/agitation/anger up until now. but when i suddenly considered the idea that i could be on the spectrum? it all fucking *clicked* and i know for a fact i am absolutely autistic. the idea of not being believed because of an age bias horrifies me, because it really is one of the most personal things you could expose to someone, and to be told i was lying to myself would send me into a suicidal spiral. i'm really sorry you had to experience that. happy autism awareness month, stay proud!
*hugs* I've been in similar situations and hate when you feel like you're more educated on a subject than "professionals" do. Your channel has helped me nonetheless. Starting to believe I have been misdiagnosed with borderline traits, and may actually fall under high functioning spectrum of autism. The more I learn the more it makes sense. Also looking to get a real diagnosis so thank you for sharing your stories
Hey Stephanie thanks for sharing your journey, I am an empath part of my ASD and boy did I feel your frustration, pain and confusion, I felt like I was in the doctors with you, I can relate to how you would have been feeling, it's awful. Without great knowledge of what we experience of this world, they (people in general) are going to just make assumptions and judge us. The drug test is just terrible but not surprising ..... that's how we come off to the unknowing, it would be great if there was better guidelines for the GP's to follow when people come to them openly trying to discuss this .... I love the advice you offered at the end. Thank you again for sharing what was very traumatic part of your journey.
I just went to my primary care doc for a possible autism diagnosis and it was stressful and scary. First, I had my two sons with me, 3 year old and 3 month old and when my doc asked why I was there I felt the same way. I just didn’t know what to say. But he was pretty nice and he’s got me a referral to a psychiatrist and psychologist. He referred me to both so that I can get in as fast as possible because I’m alone with my 2 children since my husband is deployed and I’m struggling. I was so scared that my doc would judge me or not believe me.
Ugh, I can totally relate. I went to talk with my PCP about a mental health referral because I feel fairly certain I have autism and she tried to give me religious advice, dismissed me, accused me of lying repeatedly, and then gaslit me with a non-apology about how it was my issue. It’s unfortunate because I’ve been singing her praises for over a year, but for whatever reason she did not take this visit seriously. I got up and walked out without the referral, feeling incredibly defeated. I had a therapy appointment already scheduled for later that day and as I was leaving the clinic she asked if I would be able to come in right then because she’d had a cancellation. I’d already spoken with her about thinking it might be autism and she had really encouraged me to reach out to my PCP, so when I came in terribly worked up and in tears we talked it through and she got to work and had me a referral within 12 hours! Thanks so much for all the work you put in brining awareness, it’s been an incredible resource for me the past couple of months!
Excuse my french but your doctor was an ignorant asshole! This experience would have made me hide for a month and never seek an opinion on the issue again after being treated like that. I admire your courage and ability to endure the process without losing hope. I can relate so much to everything you say! I am 35 and finally seeking to figure out what's going on with me. I changed my Primary care provider before making my appointment to get a referral a few weeks ago and its a good thing I did. My new doctor was very young and knowledgeable and when I told her I would like to go directly to the University of Washington to see experts on ASD, she supported that very much. She also prepared me that ASD diagnosis might not get covered by my insurance. Now getting the referral thru, to be able to see civilian doctors is another story. I have been calling in with the referral hotline for almost two weeks now and still no new information, they just tell me to "check again tomorrow". It is nerve wrecking... Thank you so much for sharing your story. It gives me hope that all this is leading to an aswer eventually.
I got diagnosed with Social Communication Disorder in 2017 after trying to seek services from the regional center. Even though I had recieved the diagnosis of Aspergers in 2007. They questioned me in large part because of my lower support needs. I am able to do stuff such live on my own, handle transportation, go to college, etc. It was undeniable that I had social issues. She chalked up my leg stims to nervousness and I wasnt nervous.
I feel this on a deep level, honestly your scenario is my worst fear. I'm going in tomorrow to talk to my doctor about it so here I am "studying". I have major respect for you for marching through that situation.
I’m so sorry that this was your experience. 😕 I totally relate to not being able to explain it to people. I know all of my symptoms, and I can sit down and read them out & explain why each one describes me, but when I’m trying to explain it to someone without anything to reference, I basically just shutdown. The reaction is always, “As if, you don’t have autism.” or “You shouldn’t joke about that.” As if I’m making it up. Then I’m too anxious to even remember why I think I have it. & they don’t believe me even more. I understand that people have a preconceived idea of what autism looks like. Even mental health professionals aren’t exactly well-versed on the topic of “high-functioning” ASD, particularly in females. The diagnostic criteria were literally formed based on male symptoms bc Hans Asperger believed that only males could have it at first. Anyways, I think that it’s such an issue that medical doctors don’t really have to have any form of training in recognizing and diagnosing mental illness yet are still able to. Ugh. So frustrating. This is why I’m studying to become a mental health professional. I hope that we can start to progress in a lot of different aspects when it comes to mental health.
Also, thank you so much for sharing your experiences! It’s difficult for me to find people who understand. & I know that talking about such personal things can’t be easy. I appreciate you! 💕
It's nice to hear that people can relate, despite it not being a great thing to relate about. So cool to hear that you will become a mental health professional!
You are not alone. The struggle to be understood is so real. I could totally relate to you. Thank you so much for sharing! I've always been afraid to have that conversation with my doctor, maybe some day. Maybe.
I'm so sorry you went through that awful experience. Thank you for sharing such a personal story. Your content is so valuable to me in understanding my own daughter.
I am in me late 40s have had a lot of issues from childhood bottled up been dealing with depression from childhood over the last 2 weeks i have come to realize what i am dealing with i had never high functioning autism but it explains so much now looking back THANKS SO MUCH and i am saying that in all caps. it has help me to so much
Had a similar experience when I first went to a doctor for my depression/suicidal thinking. I had just got out of a very bad situation and my aunt was with me in the room and as soon as he came in I knew he didn’t really care or want to hear me out. He probably just seen another sad teenager who was going through a phase. It’s the reason I refuse to go to the doctor about mental health. I’ve gotten this far on my own and I don’t need to pay someone thousands of dollars to tell me what I already know.
As I've said before, I cannot thank you enough for your videos. For the first time ever, I'm beginning to understand some of the people in my life. Bless your soul .
This whole experience sounds horrendous! 😱😱😱 Seriously, a drugs test?! I was actually thinking of going to my Dr's to get going with a diagnosis, but perhaps not!!! 🙁 I have had anorexia and other mh diagnosis but no one has ever noticed these very obvious signs in me other than obviously myself and now a friend who has aspergers and could relate to what I was saying about my struggle with life!! I could tell how anxious you were just recalling your experience here. I am grateful to you for your raising this kind of awareness and offering support to others x
I’m sorry for you. I can see how stressful those memories are for you. But in the end you win. I’m thrilled you had the conviction to follow it thru to the finish.
Thank you. Very helpful. I empathize greatly, as I have had numerous missed connections with docs snd nurses, even getting "fired" 3x by docs because THEY were not sensitive to my needs or aware of reality. It was even implied nonverbally that I was drug seeking when I requested a script refill for PHYSICAL THERAPY, which was denied. Apparently, according to that doc, my issue was not the pinched nerves in my neck or the chronic muscle knots throughout my body that my neurologist diagnosed, but some mental hypochondriac issues and neuroses. The traumas haunt me years later. The practice of projecting THEIR issues onto patients and reading into their behavior must change. I swear, the next doctor that presumes my issues are "mental", I want to slap them with the concept that they are practicing psychology without a license, so please STOP! Sorry for the rant. Your experience just hit home with me. On a different note, .... Wonder how many routes there are to diagnoses. I know people who go through a series of neurological testing and executive skills assessments. From what I understand, there are several conditions that must be eliminated to receive an accurate diagnosis, but I don't know the best process. What is the "fail-safe" path to the most reliable assessment?
I had a roomful of doctors staring at me when I was 6, when I was tying my shoe. I'm so sorry it happened to you, too. It does make you feel like a freak. 💙
I am pissed that you were treated so poorly! You would be fully in your rights to file a complaint. Find a new provider ASAP if you have not already. You deserve so much better! I am proud of the progress you made on your journey. I will try to use my mom as a support person to attend an appointment. She has a different perspective on my childhood and behaviors. Thank you. Thank You! THANK YOU!
Trying not to cry listening to this. So relatable all the information you know is gone once the pressure is there. I had a similar thing happen at a psychologist/psychiatrist. I mentioned I thought maybe I had mild asperger's or something like that. And as soon as she asked why all I could think was " I related to the symptoms when I heard them" and she basically said "No".
I’m 41 and feel fortunate my PCP was open to my suspicions. I’ve been seeing her for anxiety for awhile. When my daughter got diagnosed, we put two and two together. Got my referral. I took the raads r online and not surprisingly scored a 203. But I agree, it is HARD to find a place that evaluates adults.
I have similar notes recorded for when I try to get a diagnosis, I wAs planning on keeping them in my bag or pocket, but I'm afraid I'll also not have the guts or the capacity in general to pull them out. Thanks to this, I think I'll make an effort to hold them in my hand when I go in, hopefully they'll see that and ask about it. (shoutout to poor executive functioning, @ my lack of initiation skills🤣)
I'm crying listening to this. This is almost 100%, word for word, what I am going through getting my diagnosis assessment right now. As a 23 year old woman (which is what I am right now), you have to fight HARD to get your diagnosis. It is exhausting, it feels like drowning. It is absolutely horrible. When will people realise that women/girls have autism too, I am sick and tired of us not being heard or believed because of steriotypes. I'm sick of hearing stories like this, stories of women desperately trying to get help, and not being believed.
I'm so sorry you went through that. I failed as well when I went to see a psychiatrist. He said I was clearly not autistic, and that it would get better if I stepped out of my comfort zone and stopped considering people as a threat. By the end of the appointment, I was silent, on the verge of tears, as he prescribed me anti-depressants to calm my anxiety down. I had chosen not to pull out my papers because I was scared it could bias his diagnosis. I won't make that mistake again.
Arrrgghh! I hate injustice!!! The doctor or the insurance company needs to pay for the drug test. No one wants to have to fight a battle, but if it were me (on a good day, anyway), I'd write a letter explaining why I refuse to pay and that I am prepared to report the issue to state and/or professional oversight agencies (which is research beforehand) if the charges weren't reversed and if they caused me or my credit rating any problems. I'd use my written explanation to contest any adverse reporting to credit rating agencies. They then have to investigate and may decide to remove the adverse report. I'd also check with state insurance regulatory agencies as to whether my insurance company can legally refuse to pay. I just HATE all the injustices of your experience with that office! That was a case of ignorance which led to discrimination, which led to damages - both monetary and emotional. Anyway, I'm so sorry you had that whole experience. I can very easily imagine myself in your place. I actually have been in very similar situations. Too many people are shallow and ignorant and suck at their jobs.
This was the most stressful video for me like I feel like I'm in the doctors office. Luckily I'm 19 and it's not completely off for me to take my mom to the doctors still (I didn't once to the allergist/asthma doctor and it was terrifying) I do not know how I'll do anything when I'm any older
I'm 60 and just figured this out. It costs thousands of dollars for an official diagnosis. They didn't even know what asd was, when I was growing up. They can't 'fix' it, and at my age; it just helps to know why I've been through what I've been through. I look at it as I just have the answer now.
That sounds like it really sucked. I understand where you're coming from though I really hate going to the doctor's. When I go to the doctor I completely mentally shut down and I can't get anything out as to why I'm there. To help remedy the situation I put a disclaimer in my chart saying that I am autistic schizophrenic and have all kinds of issues communicating. I also put in there that I feel like I have been narcissistically abused by doctors. That really stepped things up and they listen to me now. Before even if I went in for an ear infection to get antibiotics they would just want to refer me to behavioral health anyway. so when I went for my autism diagnosis I went straight to a psychologist for an evaluation. Luckily my insurance covered most of it because I was doing it for marriage counseling reasons. But come to find out even though I went in for autism they gave me schizophrenia instead but also left allowance for autism. but I guess since schizophrenia is more serious it trumped the autism. They can look very similar though in presentation. Both of my boys are diagnosed on the Spectrum and I figured they got it from me, but they probably got it from me and my wife so theirs is a little more serious.
Hm maybe part of the assessment process should be being assessed by an Aspie of similar ilk...in a perfect world, right? Of which this is definitely not ...not even close.....
I can relate a lot. I've had similar experiences with Doctors and even psychologist. I've been trying to get a diagnosis for two years, no one believes me still.
This is my worst nightmare. I’m so scared I’m not gonna be believed. Luckily my GP supported me getting tested when I met with him about it, but it was moreso “let’s figure this out but I’ll be surprised if it’s autism” and felt dismissive in an ignorant way (despite being told my whole life that he’s way more knowledgeable about mental health than his colleagues). “What’s the worst that can happen?” This. And the fact that this horrendous treatment is so common justifies my catastrophic thinking. If anyone did the research I’m doing they’d understand why I’m being so obsessive and controlling about where I’m getting tested and learning everything I can about autism beforehand. I’m so sorry you had to experience that Stephanie, it’s not fair.💕
Thank you so much for sharing this. I have done lots of research on autism after some family members said they thought I had it. I researched for 4 years now and hope to one day go for a diagnosis, but I am afraid people won't listen or believe me just like you experienced. Sorry that happened to you.
I'm so happy uncle Google overhears and scans my conversations and I "came across" this video today! And on one hand it is good I do it during the "pandemic" because no matter how much I hate talking on the phone, I'm still better at it than face-2-face 'cause I can prepare, so after weeks of, at first hopeless, trials, happy birthday to me - I got my referral today! I had to go and physically pick it up from the health centre, but yupie, I didn't have to deal with the GP :0)
On the other hand, it's going to be 6 months before I have my appointment, so I need to see someone to talk to and I'm almost already sure no one will fit to my liking. I've been SERIOUSLY practicing for a month answering to the question "What are you here for today?" and I already know that I'll be all over the place without my notes saying not what I want to say, but what they want to hear, including that I'm a serious killer. But the moment I pull out my notes, they'll go "ok, she's lying". There must be something terribly wrong with her. Or even better: "poor focus". Let's give her some drugs 🤦♀️
This is my biggest fear about pushing for a diagnosis. I'm glad it all worked out for you in the end tho. I'll be sure to take someone in with me when I pluck up the courage.
Thanks for sharing. I wonder how it will be for me trying to get diagnosis in UK when I am 50plus. I have developed ways and have tools with dealing with people now, so hoping I will be OK if I do get referred.
Thank you for sharing this! I'm working up the courage to get a diagnosis (and also saving money). It sucks so much that you went through such a horrible experience and it shows how unknown autism still is. I've found some great psychologists in my area who are true autism experts and do a lot of great work for the community so I'm definitely going there. I'm glad you did get a diagnosis.
Be aware, that when your doctor starts pulling in other doctors for a second opinion on the spot, it is primarily a dodge to avoid liability issues that might stem from making a wrong diagnosis.
I am 39 and I have been thinking I have autism for a few months now. I am so afraid of going to my doctors to get a diagnosis because of the reaction you had. I make lists and notes and put crap in my phone and as soon as I get into the office I feel numb and disassociate. I cover up how badly things are because I fear that they will take my daughter away. There are too many ignorant people who think people like me cant be a parent. I am currently up and waiting for the doctors office to open so I can speak to the receptionist. I think I will ask for her to make a note and ask for an email so I can write everything down and send it in for my file. My doctor is good with mental health issues but I am not good when it goes outside his office. I have taken the online quizes and score 171/200. I am scared also because I think my daughter is as well and in Canada the symptoms are all about boys atm. It has taken a lot of time for a depression diagnosis because People overlooked how functional I seem. Truth is I feel like I am hanging onto a blade of grass. So thank you for shari g this cruelty you have endured. I am sorry this happened, but selfishly, its helped me sort out how to approach things.
believe me I KNEW I was different when I was young ~> trying to put personal thoughts (feelings/emotions) in to words is very difficult - being put on center stage/spotlight can be next to impossible sometimes (2 of my adult sons and I are on the spectrum) The script we've written at home doesn't play out so well in the real world.
Thank you for sharing this, I just got diagnosed with level 1 asd as an 18 year old female. Idk if you’re from the u.s but Aspergers is no longer a diagnosis in the u.s btw, it’s just ASD now.
Good point about getting riled when ppl asking you the same question more than once when you already answered them. I didn’t know that was related to autism. They shouldn’t have tested you for drugs without your express consent. That’s unethical. Should’ve also advised about insurance covering the blood tests.
I'm so glad you posted this. It's so hard to find any kind of information regarding getting a diagnosis in the US. This is the first video I found of someone not in the UK. I have no idea where even to start, and it doesn't help with our dumb healthcare system - do you go to your regular doctor (if you even have one) and do they refer you, and if so how do you find out if it'll be covered by insurance (because they don't tell you up front if it's covered or how much it'll be)? It's just a confusing mess and I'm terrified of the same situation happening to me. Even at normal/straightforward appointment I have such a hard time getting the words out and if I'm put on the spot or they ask something I'm not expecting I completely forget what I'm trying to say.
So I was able to go to a normal doctor to talk about it with a request for referral. Some places you can call up and ask about assessment but some need referral and some don't. I couldn't find anyone by my own means until I went through my normal doctor and they sent in the referral and that place called me. The place calling me confirmed they took my insurance on the phone. You may also want to call the number on the back of your insurance card and talk to them about the situation and also see if they can email you a list of providers in network and for coverage info specific to your needs
@@StephanieBethany That's so helpful, thank you. I was worried I'd go to my main doctor, they'd tell me there's nothing they can do, and then ask me to pay them anyway :) Most of the places I've found only deal with children through teens so it's difficult. I'll definitely try that. Thanks!
you are very brave! How this doctor managed your case is horrific! He deserves that you report him cos otherwise they keep acting unprofessionally and hurting patients! I'm shocked and admire your strength!
Social pragmatic communication disorder- that’s what they tried to diagnose my 16 yr old daughter with until I insisted several times that the therapist do an autism evaluation. The therapist came back wide-eyed and said that yes, she WAS autistic. They didn’t think so, but she was. I have two more that I know are on the spectrum, but don’t have a “formal diagnosis”. Now here I am watching your videos and wondering why I’m sympathizing (empathizing?) with you.
i am so sorry that your doctor was such a quack. i will be 42 next month, and just now starting to seek an autism diagnosis (hubby says i clearly am). The thing most people doesnt understand is that autism varies from person to person. people think they know everything simply by watching a movie. But they cant see it thru an autistic persons eyes.
Unfortunately most doctors don't act like humans. They act "clinical" it it's very hard (for me) to connect with, especially when you just need understanding & compassion. It's aweful, & I'm really sorry you had this experience. ✌ & ❤!
I think I am going to research that social communication disorder - Maybe that fits better to my issues than autism, since I dont really think i am autistic, just weird, mostly in social things. Didnt know there exists a separate diagnosis for this, so maybe this is something that helps me out, actually
@@StephanieBethany well I have definitely some issues especially with social communication, so a lot of those autistic traits regarding communication and social stuff and not looking into the eyes and being awkward fits so well - but then again people like me, apparently despite of that or maybe because of that, I dont know. But I lack some of those trademark autistic traits like having a regular schedule or doing repetitive tasks or wanting to plan everything ahead or having food issues. I basically went to the USA when I was 22 without much planning and decided to just buy a car there and drive around the country for a while - this is as un-planned as it can get. So really its mostly the social stuff that makes me go "yes thats similar to my experience" - and maybe some of the sensory overload stuff - but less so the restrictive behaviour parts
I've spent hours talking about and learning about ASD but when it came time to talk to my (new and first since adulthood @ 31yrs old) PCP a little while ago and suddenly... it was hard to verbalize. Hard to talk about, hard to put myself out there. Even after talking about it with a psychiatrist and a therapist. Even after watching channels like this and others. So yea, not just you. And I'm a male, so I don't even have that extra stigma. Luckily my DR was pretty nice, otherwise I wouldn't have even had the courage. But, in the end, it was what I expected: We both just kind of agreed there wasn't a lot of reason to go through the whole full process as an adult since it wouldn't really lead to... anything. :\ I am 100% sure that, if I wasn't on my ADHD meds I wouldn't have even brought it up. And that's another thing... my psychiatrist keeps telling me improved social skills aren't really meant to be a part of my ADHD meds, yet it's among the biggest effects I notice... Especially when I'm dealing with "officials" like doctors, cops, etc, my heart is racing, my eyes are darting, I'm basically pushing through panic to be able to accomplish whatever it seems like I'm supposed to. For whatever reason, ADHD stim meds make that process much less difficult to deal with while remembering anything else. I'm not one to rock in public, but I know I'll be wide eyed and speaking quickly and very much in distress, but decades of masking to get through mean I DO have capability to get through, and that's basically all I keep telling myself.
I feel and understand your pain so deeply😭❤️❤️❤️ I cannot tell you how many doctors appointments have ended in utter chaos, with me in hysterics, making no sense, crying and increasingly frantic and in a frustrated rage and sorrow, that the person/persons in front of me are looking at me like I'm crazy and possibly on drugs. Seeing it in their eyes and hearing it in their tone of voice and words. It is devastating and resulted in me for years simple not going to the doctor or to hospital at times when I really should have. I still experience it, especially if I have to be there for a longer period of time. I aaaalllways end up freaking out and to the putside world it may seem like it is out of the blue! But they of course dont see or feel the building up of mayhem inside of me. - though I always have found that strange and really enoying (are they FRIGGIN MORONIC FAKE A.. DOCTORS IN STOLEN WHITE COATS!?!!!?), as all the signs are there if they actually paid attention!! I HATE doctors and nurses (though nurses can sometimes be nicer & brighter than the "high and mighty's") with a passion. I have NO trust and NO respect for their titles anymore. If they font treat ME and my "situation" with respect, empathy, professional curiosity and dignity, then they are useless to me. I know what is to come and how it will end, with me feeling crushed, humiliated, confused, angry, in floods of tears and shutting down completely. From meltdown, to shutdown, to emotional exaustion lying curled up in the dark for as long as it takes to put back together the pieces of my broken body, mind, spirit and soul and trying to accept that whatever ai went to the doctor for in the first place, remains unresolved and that I will have to try again when I feel I can cope with another (most likely) patronizing doctor rejecting me all over again.. So yes, I really do understand and feel your pain❤️❤️❤️❤️❤️❤️❤️❤️❤️
Doctors do get a lot of attention and drug seekers, so I can understand their skepticism, but it's fair to say they don't know so much about this. Of course I'm from a different country so different attitudes. My partner is a doctor (and quite skeptical) I think she comes at it from the point of view of "you won't be a public health priority, and what's the point? (unless you need medication)". For what it's worth I haven't been through any of this, I haven't had the confidence to take it anywhere..
I hate talking to doctors in general as a woman but I hate even more talking to them about psychology stuff because the whole thing is that they’re not specifically trained or educated about it. Like why do I have to talk to someone who isn’t trained to determine if I can go see someone who is?
I am planning to ask my psychiatrist about going for a diagnosis. I've already spoken with my therapist and she did agree that indeed I seem to have some Asperger traits. But she isn't trained in this kind of diagnosis process and she said there are other places and my psychiatrist should know more details.
Oh my god, this is so disgusting. A urine test for a drug screen? What insanity. I can so relate to the disbelief and your inability to cope. I'm lucky in that I have the best primary care physician I've ever had, though there are no autism resources for adults in my town. I can tell how hard it was for you to share this painful experience, and thank you for doing so. People really need to understand how hard it can be.
Here are two things everyone in your position needs to know. First, the ADA gives you the right to request reasonable accommodations and the US Dept. of Justice takes violations very seriously. So when you make your appointment(s), follow up with a written request for your accommodations and send it to your doctors office via certified mail with return receipt. Make sure to start with "Under the Americans with Disabilities Act, I request the following reasonable accommodations." Then make a list of all that apply, for example: 1) Do not use minimizing language. 2) Do not touch me. 3) Have someone present who has been trained to recognize the symptoms of autistic meltdown. 4) etc. 5) etc. Second, bring someone with you as a witness. If any of the health care providers do not respect any your accommodations, contact the US Dept of Justice and file a complaint ASAP. It's easy to do. Just follow the instructions on their website (ADA dot GOV). I guarantee they are going to treat you with the respect you deserve once you have the Feds backing you up! Just make sure to make request in writing and have a witness. Else it will turn out like traffic court when it's your word vs. the cop's word.
Ugh, that doctor's visit is my worst nightmare. :( I had a terrible feeling about the urine test and knew what it was for before you even talked about it being a drug panel. :( I wonder how doctors aren't more curious than they are(n't) sometimes, or they assume the absolute worst. Isn't it their job to continue reading medical books or take up-to-date classes so they can help as many people as possible? I hate when people get sketched out super easily, too. Reminds me of my gynecologist, who's basically just as bad, and I've only had him try to help me with depression/anxiety that spikes around PMS times.
I'm sorry for your horrid experience. Ive heard you mention in another video you strongly feel we need a lot of education here in the states about what autism is. I have to strongly agree with you, especially after your story. Perhpas you're the one to educate the world. :) Its a lot to ask but you sure seem to understand and be able to convey the huge void in understanding.
I love my therapist and he helps me with my cptsd. BUT I really think I do have aspergers as well..he says he doesnt see it. I felt like I hit a wall bc if he doesnt validate it who would?
That's the frustrating part about this stuff for sure. A lot of times you may be working with someone who isnt really all that familiar with certain things bc they dont specialize in it. It's up to you if you want to seek a second opinion on that matter, but I can definitely understand why that would be difficult
@@StephanieBethany I definitely do want to be checked out by someone else. I guess I'm just scared of having this experience again. I've been searching google about all my experiences and it's all leading to this. Being very transparent ( too honest it can be offputting ), understanding social rules like I read them in a textbook, fiercely loyal and black and white sense of justice, head/skin scratching that I just realized could be stims. If I made friends they were almost always men. Women confuse me because they're not usually direct. The list goes on. I think you know what I mean.
I've already experienced a similar type of disrespectful and unprofessional behavior from the medical doctors etc. They make us feel like we're a nutcase or we don't know what we're talking about regarding our own health concerns! 😳😥
You poor girl! I can see your anxiety and difficulty processing or putting things in words. I'm starting this process now at 53, after finding girls with autism on UA-cam that were like me at 51. I took my Asperger test results with me (very high) and have been referred for the next step. We know ourselves and our struggles better than anyone else and we have the right to ask for appropriate help. ❤
While it is to our credit how hard we've worked to mimic and fit in and try to function, at the same time we have been struggling all along and hiding it. I just "disappear" for a couple days and hide under the covers to recover from exhaustion and overload. Then I feel guilty, like I "should" be able to do more, and get very discouraged.
I feel like I've found my tribe. Finally I know that there are women experiencing the same things as me.
this is why i hate male doctors female doctors understand what we go through
I'm at this point...62 yrs, struggling and failing all my life and yet testing as a genius hahaha...what a stupid type of genius this is.
Anyway my primary MD referred me after only a few brief questions and strong encouragement. I feel grateful for that because clearly not everyone has that initial experience.
@@kasperorganics-organiccott6881 Same
I just found out today that I can skip asking my primary care doctor for a referral. I am happy because I don't think it would have gone well.
I have been drug tested in the past. It is so annoying when you know you are clean.
I feel like crying. This is so awful. The medical community is unbelievably ignorant not only about autism, but especially adult autistics and like you said being a female on the Spectrum.
absolutly agree. I'm currently struggling with this point because my experiences with doctors has been so bad (especially as a woman) in the past couple months regarding some physical health related problems until I felt anxious to go to a doctor even though I needed to. So I don't feel like I can put up with their patronizing treatment again anytime soon but I would also really like to know, if my feeling to be on the spectrum is right. I live in Germany and general doctors and even psychologists are often very old school here and it feels like they never really updated their knowledge after graduating. I absolutely don't feel like I could bring this topic up with any doctor or specialist I have talked to ever.
Streets0fLondon There is one practitioner who does evaluations online from Australia, and she has a sliding fee scale....so if you dont have a lot of money you won't have to pay a lot. She is Tania A. Marshall, and she is on Facebook....she is the woman who wrote some of the first books on female autism. There are others aroind the world who do this online as well
@@ksthoughtpalace3042 thank you so much for suggesting this! I have seen her name before when I saw book recommendations, didn’t know there was a possibility to do this online and also without having crazy amounts of money. This is really helpful, thank you!
Streets0fLondon When you try to get ahold of her, be persistent...she is an Aspie herself. She took so long to get back to me I had already given up. And of course keep looking for other online practitioners. I finally got my diagnosis in person by a neuropsychologist who specialized in children, but did evaluations for adults when she had time. Her office also took my insurance.
yup. I have pretty much given up on getting any kind of care tbh. I have been diagnosed with everything. bipolar. dissociative disorder. BPD. etc. Now I am frankly terrified to go talk to mental health professionals at all.
As soon as you said they wanted to order blood and urine tests, I thought, 'WTF! They think she's on drugs?!"
I got lucky in that I have a really good psychologist that I've been seeing for depression and anxiety, so when I realized and researched for myself that I might have Aspergers and brought it up with him, he was like, 'Well, I don't know a ton about the subject, but I'll research and we can discuss it next time we meet.' When I showed him a list of female traits, I could tell he recognized some of them in me since I'd been seeing him for a while.
On the other hand, I have had other physical health issues where I've been met with skepticism and patronizing comments. It's so irritating. I'm sorry you had such a negative and frustrating experience.
It’s so sad how difficult it is to get a diagnosis as an adult. I just got a referral from my primary doctor. Good thing is coronavirus time, so we just talked on the phone. He was gracious about giving me a referral and after looking at my history of being diagnosed for anxiety and other disorders he agreed that yes, I might be right. The reason I’m glad we talked on the phone is cause I had major shaky hands when I was talking to him! Now hopefully I can have my assessment if the world does not end!😷😂
OMG you had me reliving several episodes in my life where I felt I was cornered and had no way out... that panic and frustration with not being able to easily come up with coherent "answers" to all the "whys" and "hows" that come with people confronting you on YOUR reality. Those people just do not know what it's like, yet do not have the patience to at least try. That said, I am glad you got through all of it. Good for you!
Thank you for sharing. This really triggered me about my attempts to advocate for myself and feeling silenced and discredited and patronized. It takes bravery to go for help. ❤️ Also, I totally relate to having been doubted and being defensive from the start! Next time I ask about Autism, I will take my husband, or my mother, because of your advice. 🙏
the doctor's behaviour unbelievable! when you imagine someone finally makes themselves to open up about something so personal and teterrifiyng and they treat them like this.. Im 26y/o female, I went to see my GP a few days ago, I was so scared. I thought she wouldnt believe me, but when i nervously told her i suspect i could have Aspergers and attention deficit disorder, she was really understanding, she only asked me to tell her some examples i was struggling with (of course i had a blank mind too and it was hard to come up with something right in that moment). she wrote me the refferal right away and told me to hold on. thank god for her
I went to my doctor yesterday about this and had as opposite of an experience as you did. My doctor and her 2 nurses work as a team and could not have been nicer about why I was there. I got a referral to a neuropsychologist and shit tons of reassurance. I also had notes and did take them out but didn't need them because of how understanding they were of me.
When i was a kid my mother had to bring me to a psychiatrist because of school issues. He talked to me then to my mother and me together and i remember him saying i had a "Mild form of autism". My mother refused to accept it,saying i was too smart to be autistic and she didn't want that diagnosis to hold me back,insisting i was shy and would grow out of it. Doc said i would be this way my whole life and there was no cure, but he pulled out a book and looked through it, eventually saying that "Schizoid personality disorder" had a lot of overlapping criteria and less stigma. So i don't know if i ever got an official diagnosis, but after that the school put me in a special class and just let me read all day and not have to talk to anyone.
Was never brought to any other psychiatrists since then so whatever diagnosis i had disappeared i imagine, since my childhood records were destroyed 11 years ago. Not sure what to do now,the idea of going to a psychologist to get a diagnosis fills me with dread, since even normal doctors rarely believe me about anything.
That's rough. Seems like you may or may not have a diagnosed floating around somewhere, especially if it got you put in another class. History of IEP or special ed classes can help establish a history or "proof" of something worth looking at for some professionals. I am concerned that a psychologist would be potentially willing to change your diagnosis purely to placate a parent, but it doesnt necessarily surprise me. Hope you're able to find the answers you need!
I'm sorry you went through that. I can totally relate. I think Western medicine in general is still very uneducated about ASD in adult women and that there's a spectrum. I went to see a therapist recently within my insurance network to seek an asd diagnosis and the therapist was nice but totally ignorant about autism and she just went by a checklist on her computer for full blown non-functioning autism. She didn't hear me out about the subject and about my symptoms and just said i had generalized anxiety disorder and to go read some self help books. I was so angry & hurt after i left because it feels like nobody believes me or understands me. This has been a life long struggle. Its more than just anxiety, i know it, but nobody in our society cares or thinks its an issue. Its such an isolating feeling. I am seeking a new therapist. Wish me luck. :(
Oh man, that's rough. I hope things go much better with a new therapist!
I know it must have been hard to relive this when speaking about it, but I'm really grateful that you did. Hearing your struggle with articulating and not being able to think and not connecting with others easily and people just looking at you like there's something wrong with you because you just can't get out your thoughts...that happens to me so much and I just end up in tears because they think it's silly its so hard for me. I felt like you were speaking my thoughts. Seeing your video gives me motivation to be brave and seek out a diagnosis. Thank you
Really sorry to hear that, Stephanie. But not surprised. I'm going through the same thing at 63. Sadly, your experience with adult diagnosis is the norm. Hopefully we will both live long enough for that to change.
Thank you so much for sharing the reality & truth of this traumatic experience. I know that's not all you want us to take away from this, but I've recently been trying with 2 primary care doctors to get a good referral, and I'm getting the same kind of stupid pushback. Both have asked me "What will a diagnosis change?" or "What will a diagnosis DO for you?" followed by the 2nd one actively trying to dissuade me from pursuing this line of testing EVEN BEFORE I'VE HAD ONE TEST. She's already told me to be prepared to "give up" if I do actually manage to get tested & I'm found by one person to not be on the spectrum. (When we all have read multiple ASD folks' stories about multiple misdiagnoses & struggles, before an accurate diagnosis. And stories about dealing with "specialists" who actually didn't know what they were doing, especially with adult women on the spectrum.)
It's maddening. But you being here & bravely telling this story, and obviously not having given up, is going to help give me strength to keep pressing on. The current doctor actually managed to wrangle out of me (before the first psych or specialist appt) an "I guess I'll give up if it's negative" but DAMMIT FUCK NO I'M NOT GOING TO DO THAT! >:/
So glad to hear that you're going to keep pushing forward for someone who hopefully knows what they're talking about to be able to see you instead of the people you've been dealing with. It sucks that you've had to experience all this, but I hope the best outcome for you!
@@StephanieBethany Thank you, your reply is good for my heart.
ANNNND
thank you for posting this. I think this is the first one of your videos I've watched and it helps tremendously. I've been talking to my Dr and Counselor for a year trying to figure out why I've always struggled so much [and after a really bad melt down - like maybe life stopping] - and with no one believing me... I'm male, so don't face that prejudice, but had gotten by, as people thought, for 63 years with no one listening to the struggle... The Dr wanted to get a referral, but agreed with the Psych who said it would be a terrible uphill battle... he has been helping me to remember and reapply all the tricks I had used to do "normal life," so, yeah, I can't express it any better than this, but, thank you! The diagnosis would explain everything since I relate extremely to everything people say they experience... BUT, the techniques to more than get by are the same even without it. Good grief, hope you could read that!
You are so brave in that you kept trying to find help even though people kept rejecting you, and I'm so sorry you had to go through that ridiculous doctors appointment. I was stressed out just watching this and could feel you being stressed just talking about it again. So thanks for making the video despite that.
Also very interested in hearing how the rest of the process was and how the testing itself looked like.
Thanks for being here! And I'll have to add that to the list then :)
I've always known I was different somehow but conveying why I felt that way was always hard for me. I started suspecting I was on the spectrum when I was back in college and I realized that the only ones I ever felt like really understood me were all on the Autism spectrum somewhere. Flash forward several years and me trying to get help through counseling. My mom "loses" the appointment because she has it in her mind I only want to talk about how bad she is for some reason and I'm like I have other things to worry about now. This happened to me three different times. Last time I asked her about it and she was just like "Oh you still need that?" Finally I had enough. I had a new appointment with a Medical Doctor and I had mom wait for me in the main waiting lounge area because I had already made up my mind on what I was going to do. I was honest on the questions about depression and anxiety and when he came in I told him I wanted to see the counselor but I needed the number myself and I didn't tell my mom about it at first. He referred me to a counselor and then I had to deal with a new problem. She instantly wanted me to take drugs for the depression and anxiety and I was like I don't need drugs I need a way to cope with life. Several sessions later she really feels like I need to see a psychiatrist and I'm finally ready to give it a try. Two sessions later she finally actually refers me. I go in and he ask me all kinds of questions and then he basically explains to me that even though it's too early to tell for sure, I do have some signs that would at least suggest I most likely am on the Autism spectrum. Finally some validation. How old am I? I'm 29 and I'll be 30 in April. Can't help but feel like my life would be so much better if I found out this back when I was 9 and if my mom and I would actually have a good relationship now if she had known sooner. I never know what to say to her. I'm always scared I'm just going to tick her off and then she'll just victimize herself again to where there's zero point in me even trying to talk to her about certain stuff because she can't just own it without victimizing herself. It's a problem. Also sorry this comment is so long....just....really going through a hard time right now.
I cannot describe to you how useful this video was to me and how much comfort it brings not to feel so alone. When I started watching I hoped that you had a better experience than I did. I was told by multiple people not to tell my primary care doctor that I thought I had ASD. But my appointment went very terribly wrong and I nearly had a meltdown. I couldn't communicate with the doctor or his staff and the only thing they would diagnose me with was depression. I nearly had a meltdown during the assessment because I could barely remember the questions long enough to answer them. The only thing I could grasp from my memory was my sensory processing issues and how they overwhelm and exhaust me. I couldn't articulate or figure out how to describe any of my other problems. It was the most useless appointment ever. Especially since I got bad (but well intentioned) advice from people I trust.
Quite an amazing story!
I now look at my quite short path (at age 53) from "Hmm, ASD would explain a WHOLE lot" to my present position of being a week away from hearing the results of my ASD assessment as "holy moly, did I have it easy!"
Running into some of the same problems. It difficult to believe that there’s still this much misunderstanding among professionals! Really wish they would update the DMS to include specifics on adults and recognizing those that slip through the cracks because we’re too good at pretending we’re normal!
That is awful! I've been through several situations like that where I just shut down in the psychiatrist or therapists office when i was being "treated" for depression and anxiety. I can totally relate to having papers and evidence and everything ready but in the moment not having it in me to pull them out or say anything because of fear of being told I am wrong or being laughed at. It's extremely scary and discouraging and the opposite of what you'd expect.
Lately, I've suspected I might actually have autism symptoms and I'm considering asking my doctor about it. I am pretty comfortable with my primary doctor now so hopefully it will be easier to bring it up to him.
I'm 63 and on a waiting list for assessment, I'm not giving up. It's not easy for us us it...... Brilliant yet sad video of what you went through...
I'm already 17 and suspected I have ASD last month so I went to my school psychologist ("social worker") and she told me that getting a diagnosis wouldn't change anything, like why would that matter, we just need to learn how to handle social things, having a diagnosis isn't important, etc. And I was like bitch wtf (I didn't tell her that) but that fucked me up. She also dismissed the diagnosis of the girl in the video I showed her saying "oh I don't think she has ASD, she can look the guy in the eye and she can wait for her turn to speak" (video from The Aspie World on YT). I even gave her a physical copy of the abstract of a research I found about women with ASD and how it's different with boys, and she completely ignored it. Idk anymore, I'm not diagnosed but I think I have anxiety and depression. Idk what to do.
Ugh that's so frustrating. I would imagine you would have to see someone else who doesnt have such a misunderstanding of autism. And imo it's very important to bring up concerns of anxiety and depression, though I'm not sure if this person is the best to try to go to about it considering their dismissive attitude. Perhaps your parents can find you someone in their insurance network or something? I know it would be more ideal to go through the school but clearly that's not going well
Yooo update just got diagnosed at 19 lol.
I'm so sorry your diagnosis was so awful. I was so lucky. Here in Calgary, AB, Canada, we have an MD who is on the spectrum and he did my diagnosis. You have been one of the best resources I go to. Keep up the fantastic work!
Thank you for sharing Getting an Autism Diagnosis video. My teen daughter and I are experiencing roadblocks trying to get her evaluated for Aspergers at Kaiser psychology dept. She was diagnosed with ADD in 3rd grade, later diagnosed with Anxiety and Depression, treated for gut and bowel problems for years, and now diagnosed with Social Anxiety cause she avoids communicating and social interactions in school. Kaiser doctors don't see ALL their previous diagnosis may be symptoms of Autism, therefore they refuse to evaluate her for Autism as I (mom) requested multiple times for her at different ages. Many psychologists may not understand symptoms that are not Classic Austim, especially for young girls who cannot articulate their daily struggles and assume mom is over-thinking daughter's symptoms. I cannot stop advocating for my daughter because Kaiser doctors might be wrong.
I was diagnosed at 6 (I'm male), and naturally 2 of my three best friends are autistic women. Both lack official diagnoses. One is actively seeking it. Autism never occurred to the other until I disclosed, and raised the possibility, and isn't actively seeking a dx, but she's the most autistic person I know. We've talked about the merits of diagnosis young or old. My dx led to ABA, so I consider my friends lucky for dodging that bullet, but I know it wasn't easy for them growing up knowing they were different and not knowing why. I also dated an autistic girl whose parents knew full well she was autistic, and were told to get her an official diagnosis, but refused because they knew it would lead to ABA and discrimination, so she was undiagnosed and didn't really know she was autistic. My ex is a very happy person-ABA would have broken her soul-so her parents made the right call. It's a shame it didn't work out, because they would have made great in-laws.
People are so annoying! They don’t know how to handle me. I would be terrified in that situation. That’s why I am going about it in a low key way even though it’s almost unbearable to not be more open about it. I found a therapist who specializes in Asperger’s syndrome and am being helped through the process. Trying to find diagnostic testing under my insurance.
Glad to hear you've found someone who can help! Frustrating that you can't be open about it for now though :/
I think some doctors need refresher courses. I am so sorry you went through that alone. Is it possible to dispute the insurance coverage? It could be medically necessary to rule out that issue. It should have been advised to you that is what it was for.
Yeah, I think more refresher training courses could help so many. I did dispute it, they tried to help me, but at the end of the day said they couldn't do anything about it.
@@StephanieBethany that sucks
i relate to this *so* hard. i'm too nervous to try and get a diagnosis, because i'm scared bullshit like this would happen. i am 21 and i never even suspected i might have autism until i started to relate to literally every autistic trait i happened to learn about. up until this year i was just assuming that i had anxiety, social phobia, depression, SPD, emotional repression/disconnect, inability to connect with people, and was a super stimmy and oversensitive person all at once for no reason. on top of that, i would get meltdowns but i though they were random waves of severe anxiety/agitation/anger up until now. but when i suddenly considered the idea that i could be on the spectrum? it all fucking *clicked* and i know for a fact i am absolutely autistic. the idea of not being believed because of an age bias horrifies me, because it really is one of the most personal things you could expose to someone, and to be told i was lying to myself would send me into a suicidal spiral. i'm really sorry you had to experience that. happy autism awareness month, stay proud!
*hugs* I've been in similar situations and hate when you feel like you're more educated on a subject than "professionals" do. Your channel has helped me nonetheless. Starting to believe I have been misdiagnosed with borderline traits, and may actually fall under high functioning spectrum of autism. The more I learn the more it makes sense. Also looking to get a real diagnosis so thank you for sharing your stories
Hey Stephanie thanks for sharing your journey, I am an empath part of my ASD and boy did I feel your frustration, pain and confusion, I felt like I was in the doctors with you, I can relate to how you would have been feeling, it's awful. Without great knowledge of what we experience of this world, they (people in general) are going to just make assumptions and judge us. The drug test is just terrible but not surprising ..... that's how we come off to the unknowing, it would be great if there was better guidelines for the GP's to follow when people come to them openly trying to discuss this .... I love the advice you offered at the end. Thank you again for sharing what was very traumatic part of your journey.
Thanks for sharing your thoughts
@@StephanieBethany its a memory that will probably never leave you fully.
I just went to my primary care doc for a possible autism diagnosis and it was stressful and scary. First, I had my two sons with me, 3 year old and 3 month old and when my doc asked why I was there I felt the same way. I just didn’t know what to say. But he was pretty nice and he’s got me a referral to a psychiatrist and psychologist. He referred me to both so that I can get in as fast as possible because I’m alone with my 2 children since my husband is deployed and I’m struggling. I was so scared that my doc would judge me or not believe me.
Ugh, I can totally relate. I went to talk with my PCP about a mental health referral because I feel fairly certain I have autism and she tried to give me religious advice, dismissed me, accused me of lying repeatedly, and then gaslit me with a non-apology about how it was my issue. It’s unfortunate because I’ve been singing her praises for over a year, but for whatever reason she did not take this visit seriously. I got up and walked out without the referral, feeling incredibly defeated. I had a therapy appointment already scheduled for later that day and as I was leaving the clinic she asked if I would be able to come in right then because she’d had a cancellation. I’d already spoken with her about thinking it might be autism and she had really encouraged me to reach out to my PCP, so when I came in terribly worked up and in tears we talked it through and she got to work and had me a referral within 12 hours!
Thanks so much for all the work you put in brining awareness, it’s been an incredible resource for me the past couple of months!
Excuse my french but your doctor was an ignorant asshole! This experience would have made me hide for a month and never seek an opinion on the issue again after being treated like that. I admire your courage and ability to endure the process without losing hope.
I can relate so much to everything you say! I am 35 and finally seeking to figure out what's going on with me. I changed my Primary care provider before making my appointment to get a referral a few weeks ago and its a good thing I did.
My new doctor was very young and knowledgeable and when I told her I would like to go directly to the University of Washington to see experts on ASD, she supported that very much.
She also prepared me that ASD diagnosis might not get covered by my insurance.
Now getting the referral thru, to be able to see civilian doctors is another story. I have been calling in with the referral hotline for almost two weeks now and still no new information, they just tell me to "check again tomorrow". It is nerve wrecking...
Thank you so much for sharing your story. It gives me hope that all this is leading to an aswer eventually.
I'm so grateful for your story. As I nodded my head, I was angered, heartbroken, and more resolved than ever to educate people. Thank you!
Omg this is what I am afraid of 😭 thank you for being so vulnerable in this video. So sorry for all the idiots in the medical field. So awful!!!!!
I got diagnosed with Social Communication Disorder in 2017 after trying to seek services from the regional center. Even though I had recieved the diagnosis of Aspergers in 2007. They questioned me in large part because of my lower support needs. I am able to do stuff such live on my own, handle transportation, go to college, etc. It was undeniable that I had social issues. She chalked up my leg stims to nervousness and I wasnt nervous.
Thank you for sharing this. It couldn't have been easy but sharing this sort of thing can help a lot of people. You are brave.
Glad to hear I’m not the only one who’s been tested for drugs just because of anxiety... I mean not GLAD but... less alone?
I feel this on a deep level, honestly your scenario is my worst fear. I'm going in tomorrow to talk to my doctor about it so here I am "studying". I have major respect for you for marching through that situation.
I can relate to that so good, I must cry why seeing this... I had the same situation a few times and no one understand me.
I’m so sorry that this was your experience. 😕 I totally relate to not being able to explain it to people. I know all of my symptoms, and I can sit down and read them out & explain why each one describes me, but when I’m trying to explain it to someone without anything to reference, I basically just shutdown. The reaction is always, “As if, you don’t have autism.” or “You shouldn’t joke about that.” As if I’m making it up. Then I’m too anxious to even remember why I think I have it. & they don’t believe me even more. I understand that people have a preconceived idea of what autism looks like. Even mental health professionals aren’t exactly well-versed on the topic of “high-functioning” ASD, particularly in females. The diagnostic criteria were literally formed based on male symptoms bc Hans Asperger believed that only males could have it at first.
Anyways, I think that it’s such an issue that medical doctors don’t really have to have any form of training in recognizing and diagnosing mental illness yet are still able to. Ugh. So frustrating. This is why I’m studying to become a mental health professional. I hope that we can start to progress in a lot of different aspects when it comes to mental health.
Also, thank you so much for sharing your experiences! It’s difficult for me to find people who understand. & I know that talking about such personal things can’t be easy. I appreciate you! 💕
It's nice to hear that people can relate, despite it not being a great thing to relate about. So cool to hear that you will become a mental health professional!
You are not alone. The struggle to be understood is so real. I could totally relate to you. Thank you so much for sharing! I've always been afraid to have that conversation with my doctor, maybe some day. Maybe.
I'm so sorry you went through that awful experience. Thank you for sharing such a personal story. Your content is so valuable to me in understanding my own daughter.
I am in me late 40s have had a lot of issues from childhood bottled up been dealing with depression from childhood over the last 2 weeks i have come to realize what i am dealing with i had never high functioning autism but it explains so much now looking back THANKS SO MUCH and i am saying that in all caps. it has help me to so much
Had a similar experience when I first went to a doctor for my depression/suicidal thinking. I had just got out of a very bad situation and my aunt was with me in the room and as soon as he came in I knew he didn’t really care or want to hear me out. He probably just seen another sad teenager who was going through a phase. It’s the reason I refuse to go to the doctor about mental health. I’ve gotten this far on my own and I don’t need to pay someone thousands of dollars to tell me what I already know.
As I've said before, I cannot thank you enough for your videos. For the first time ever, I'm beginning to understand some of the people in my life. Bless your soul .
This whole experience sounds horrendous! 😱😱😱 Seriously, a drugs test?! I was actually thinking of going to my Dr's to get going with a diagnosis, but perhaps not!!! 🙁 I have had anorexia and other mh diagnosis but no one has ever noticed these very obvious signs in me other than obviously myself and now a friend who has aspergers and could relate to what I was saying about my struggle with life!! I could tell how anxious you were just recalling your experience here. I am grateful to you for your raising this kind of awareness and offering support to others x
I’m sorry for you. I can see how stressful those memories are for you. But in the end you win. I’m thrilled you had the conviction to follow it thru to the finish.
Thank you. Very helpful.
I empathize greatly, as I have had numerous missed connections with docs snd nurses, even getting "fired" 3x by docs because THEY were not sensitive to my needs or aware of reality. It was even implied nonverbally that I was drug seeking when I requested a script refill for PHYSICAL THERAPY, which was denied. Apparently, according to that doc, my issue was not the pinched nerves in my neck or the chronic muscle knots throughout my body that my neurologist diagnosed, but some mental hypochondriac issues and neuroses.
The traumas haunt me years later. The practice of projecting THEIR issues onto patients and reading into their behavior must change.
I swear, the next doctor that presumes my issues are "mental", I want to slap them with the concept that they are practicing psychology without a license, so please STOP!
Sorry for the rant. Your experience just hit home with me.
On a different note, ....
Wonder how many routes there are to diagnoses. I know people who go through a series of neurological testing and executive skills assessments. From what I understand, there are several conditions that must be eliminated to receive an accurate diagnosis, but I don't know the best process. What is the "fail-safe" path to the most reliable assessment?
I had a roomful of doctors staring at me when I was 6, when I was tying my shoe. I'm so sorry it happened to you, too. It does make you feel like a freak. 💙
I am pissed that you were treated so poorly! You would be fully in your rights to file a complaint. Find a new provider ASAP if you have not already. You deserve so much better! I am proud of the progress you made on your journey. I will try to use my mom as a support person to attend an appointment. She has a different perspective on my childhood and behaviors. Thank you. Thank You! THANK YOU!
Trying not to cry listening to this. So relatable all the information you know is gone once the pressure is there. I had a similar thing happen at a psychologist/psychiatrist. I mentioned I thought maybe I had mild asperger's or something like that. And as soon as she asked why all I could think was " I related to the symptoms when I heard them" and she basically said "No".
I’m 41 and feel fortunate my PCP was open to my suspicions. I’ve been seeing her for anxiety for awhile. When my daughter got diagnosed, we put two and two together. Got my referral. I took the raads r online and not surprisingly scored a 203.
But I agree, it is HARD to find a place that evaluates adults.
I have similar notes recorded for when I try to get a diagnosis, I wAs planning on keeping them in my bag or pocket, but I'm afraid I'll also not have the guts or the capacity in general to pull them out. Thanks to this, I think I'll make an effort to hold them in my hand when I go in, hopefully they'll see that and ask about it. (shoutout to poor executive functioning, @ my lack of initiation skills🤣)
You are not a failure at all none of us are. We need to band together and we will feel normal
I'm crying listening to this. This is almost 100%, word for word, what I am going through getting my diagnosis assessment right now. As a 23 year old woman (which is what I am right now), you have to fight HARD to get your diagnosis. It is exhausting, it feels like drowning. It is absolutely horrible. When will people realise that women/girls have autism too, I am sick and tired of us not being heard or believed because of steriotypes. I'm sick of hearing stories like this, stories of women desperately trying to get help, and not being believed.
I'm so sorry you went through that. I failed as well when I went to see a psychiatrist. He said I was clearly not autistic, and that it would get better if I stepped out of my comfort zone and stopped considering people as a threat. By the end of the appointment, I was silent, on the verge of tears, as he prescribed me anti-depressants to calm my anxiety down. I had chosen not to pull out my papers because I was scared it could bias his diagnosis. I won't make that mistake again.
Arrrgghh! I hate injustice!!! The doctor or the insurance company needs to pay for the drug test. No one wants to have to fight a battle, but if it were me (on a good day, anyway), I'd write a letter explaining why I refuse to pay and that I am prepared to report the issue to state and/or professional oversight agencies (which is research beforehand) if the charges weren't reversed and if they caused me or my credit rating any problems. I'd use my written explanation to contest any adverse reporting to credit rating agencies. They then have to investigate and may decide to remove the adverse report. I'd also check with state insurance regulatory agencies as to whether my insurance company can legally refuse to pay. I just HATE all the injustices of your experience with that office! That was a case of ignorance which led to discrimination, which led to damages - both monetary and emotional.
Anyway, I'm so sorry you had that whole experience. I can very easily imagine myself in your place. I actually have been in very similar situations. Too many people are shallow and ignorant and suck at their jobs.
This was the most stressful video for me like I feel like I'm in the doctors office. Luckily I'm 19 and it's not completely off for me to take my mom to the doctors still (I didn't once to the allergist/asthma doctor and it was terrifying) I do not know how I'll do anything when I'm any older
I'm 60 and just figured this out. It costs thousands of dollars for an official diagnosis. They didn't even know what asd was, when I was growing up. They can't 'fix' it, and at my age; it just helps to know why I've been through what I've been through. I look at it as I just have the answer now.
That sounds like it really sucked. I understand where you're coming from though I really hate going to the doctor's. When I go to the doctor I completely mentally shut down and I can't get anything out as to why I'm there. To help remedy the situation I put a disclaimer in my chart saying that I am autistic schizophrenic and have all kinds of issues communicating. I also put in there that I feel like I have been narcissistically abused by doctors. That really stepped things up and they listen to me now. Before even if I went in for an ear infection to get antibiotics they would just want to refer me to behavioral health anyway. so when I went for my autism diagnosis I went straight to a psychologist for an evaluation. Luckily my insurance covered most of it because I was doing it for marriage counseling reasons. But come to find out even though I went in for autism they gave me schizophrenia instead but also left allowance for autism. but I guess since schizophrenia is more serious it trumped the autism. They can look very similar though in presentation. Both of my boys are diagnosed on the Spectrum and I figured they got it from me, but they probably got it from me and my wife so theirs is a little more serious.
Hm maybe part of the assessment process should be being assessed by an Aspie of similar ilk...in a perfect world, right? Of which this is definitely not ...not even close.....
I can relate a lot. I've had similar experiences with Doctors and even psychologist. I've been trying to get a diagnosis for two years, no one believes me still.
I'm sorry to hear you've had such a negative experience :/ I hope you find someone who will help
@@StephanieBethany Thank you. :)
This is my worst nightmare. I’m so scared I’m not gonna be believed. Luckily my GP supported me getting tested when I met with him about it, but it was moreso “let’s figure this out but I’ll be surprised if it’s autism” and felt dismissive in an ignorant way (despite being told my whole life that he’s way more knowledgeable about mental health than his colleagues). “What’s the worst that can happen?” This. And the fact that this horrendous treatment is so common justifies my catastrophic thinking. If anyone did the research I’m doing they’d understand why I’m being so obsessive and controlling about where I’m getting tested and learning everything I can about autism beforehand. I’m so sorry you had to experience that Stephanie, it’s not fair.💕
Thank you so much for sharing this. I have done lots of research on autism after some family members said they thought I had it. I researched for 4 years now and hope to one day go for a diagnosis, but I am afraid people won't listen or believe me just like you experienced. Sorry that happened to you.
I'm so happy uncle Google overhears and scans my conversations and I "came across" this video today!
And on one hand it is good I do it during the "pandemic" because no matter how much I hate talking on the phone, I'm still better at it than face-2-face 'cause I can prepare, so after weeks of, at first hopeless, trials, happy birthday to me - I got my referral today! I had to go and physically pick it up from the health centre, but yupie, I didn't have to deal with the GP :0)
On the other hand, it's going to be 6 months before I have my appointment, so I need to see someone to talk to and I'm almost already sure no one will fit to my liking.
I've been SERIOUSLY practicing for a month answering to the question "What are you here for today?" and I already know that I'll be all over the place without my notes saying not what I want to say, but what they want to hear, including that I'm a serious killer. But the moment I pull out my notes, they'll go "ok, she's lying". There must be something terribly wrong with her. Or even better: "poor focus". Let's give her some drugs 🤦♀️
This is my biggest fear about pushing for a diagnosis.
I'm glad it all worked out for you in the end tho. I'll be sure to take someone in with me when I pluck up the courage.
That sounds horrific, I'm glad my experience (in the UK) was much easier. No one doubted me and I was able to fill out the referral form myself.
Thanks for sharing. I wonder how it will be for me trying to get diagnosis in UK when I am 50plus. I have developed ways and have tools with dealing with people now, so hoping I will be OK if I do get referred.
Girl I have had people not believe me my whole life lol
Thank you for sharing this! I'm working up the courage to get a diagnosis (and also saving money). It sucks so much that you went through such a horrible experience and it shows how unknown autism still is. I've found some great psychologists in my area who are true autism experts and do a lot of great work for the community so I'm definitely going there. I'm glad you did get a diagnosis.
I'm so glad you've found some experts in the area, that's awesome! I hope all goes well!
Omgosh I'm so sorry this HAPPENED to you and I understand COMPLETELY! 😥
Be aware, that when your doctor starts pulling in other doctors for a second opinion on the spot, it is primarily a dodge to avoid liability issues that might stem from making a wrong diagnosis.
I am 39 and I have been thinking I have autism for a few months now.
I am so afraid of going to my doctors to get a diagnosis because of the reaction you had.
I make lists and notes and put crap in my phone and as soon as I get into the office I feel numb and disassociate. I cover up how badly things are because I fear that they will take my daughter away. There are too many ignorant people who think people like me cant be a parent.
I am currently up and waiting for the doctors office to open so I can speak to the receptionist. I think I will ask for her to make a note and ask for an email so I can write everything down and send it in for my file.
My doctor is good with mental health issues but I am not good when it goes outside his office.
I have taken the online quizes and score 171/200.
I am scared also because I think my daughter is as well and in Canada the symptoms are all about boys atm.
It has taken a lot of time for a depression diagnosis because People overlooked how functional I seem. Truth is I feel like I am hanging onto a blade of grass.
So thank you for shari g this cruelty you have endured. I am sorry this happened, but selfishly, its helped me sort out how to approach things.
believe me I KNEW I was different when I was young ~> trying to put personal thoughts (feelings/emotions) in to words is very difficult - being put on center stage/spotlight can be next to impossible sometimes (2 of my adult sons and I are on the spectrum) The script we've written at home doesn't play out so well in the real world.
This is straight up
Thank you for sharing this, I just got diagnosed with level 1 asd as an 18 year old female. Idk if you’re from the u.s but Aspergers is no longer a diagnosis in the u.s btw, it’s just ASD now.
Good point about getting riled when ppl asking you the same question more than once when you already answered them. I didn’t know that was related to autism.
They shouldn’t have tested you for drugs without your express consent. That’s unethical. Should’ve also advised about insurance covering the blood tests.
I'm so glad you posted this. It's so hard to find any kind of information regarding getting a diagnosis in the US. This is the first video I found of someone not in the UK. I have no idea where even to start, and it doesn't help with our dumb healthcare system - do you go to your regular doctor (if you even have one) and do they refer you, and if so how do you find out if it'll be covered by insurance (because they don't tell you up front if it's covered or how much it'll be)? It's just a confusing mess and I'm terrified of the same situation happening to me. Even at normal/straightforward appointment I have such a hard time getting the words out and if I'm put on the spot or they ask something I'm not expecting I completely forget what I'm trying to say.
So I was able to go to a normal doctor to talk about it with a request for referral. Some places you can call up and ask about assessment but some need referral and some don't. I couldn't find anyone by my own means until I went through my normal doctor and they sent in the referral and that place called me. The place calling me confirmed they took my insurance on the phone. You may also want to call the number on the back of your insurance card and talk to them about the situation and also see if they can email you a list of providers in network and for coverage info specific to your needs
@@StephanieBethany That's so helpful, thank you. I was worried I'd go to my main doctor, they'd tell me there's nothing they can do, and then ask me to pay them anyway :) Most of the places I've found only deal with children through teens so it's difficult. I'll definitely try that. Thanks!
you are very brave! How this doctor managed your case is horrific! He deserves that you report him cos otherwise they keep acting unprofessionally and hurting patients! I'm shocked and admire your strength!
Social pragmatic communication disorder- that’s what they tried to diagnose my 16 yr old daughter with until I insisted several times that the therapist do an autism evaluation. The therapist came back wide-eyed and said that yes, she WAS autistic. They didn’t think so, but she was. I have two more that I know are on the spectrum, but don’t have a “formal diagnosis”.
Now here I am watching your videos and wondering why I’m sympathizing (empathizing?) with you.
i am so sorry that your doctor was such a quack. i will be 42 next month, and just now starting to seek an autism diagnosis (hubby says i clearly am). The thing most people doesnt understand is that autism varies from person to person. people think they know everything simply by watching a movie. But they cant see it thru an autistic persons eyes.
Unfortunately most doctors don't act like humans. They act "clinical" it it's very hard (for me) to connect with, especially when you just need understanding & compassion. It's aweful, & I'm really sorry you had this experience. ✌ & ❤!
I think I am going to research that social communication disorder - Maybe that fits better to my issues than autism, since I dont really think i am autistic, just weird, mostly in social things. Didnt know there exists a separate diagnosis for this, so maybe this is something that helps me out, actually
Could be! Though a lot of professionals contest its validity as a separate thing, just be aware
@@StephanieBethany well I have definitely some issues especially with social communication, so a lot of those autistic traits regarding communication and social stuff and not looking into the eyes and being awkward fits so well - but then again people like me, apparently despite of that or maybe because of that, I dont know. But I lack some of those trademark autistic traits like having a regular schedule or doing repetitive tasks or wanting to plan everything ahead or having food issues. I basically went to the USA when I was 22 without much planning and decided to just buy a car there and drive around the country for a while - this is as un-planned as it can get. So really its mostly the social stuff that makes me go "yes thats similar to my experience" - and maybe some of the sensory overload stuff - but less so the restrictive behaviour parts
I've spent hours talking about and learning about ASD but when it came time to talk to my (new and first since adulthood @ 31yrs old) PCP a little while ago and suddenly... it was hard to verbalize. Hard to talk about, hard to put myself out there. Even after talking about it with a psychiatrist and a therapist. Even after watching channels like this and others.
So yea, not just you. And I'm a male, so I don't even have that extra stigma. Luckily my DR was pretty nice, otherwise I wouldn't have even had the courage. But, in the end, it was what I expected: We both just kind of agreed there wasn't a lot of reason to go through the whole full process as an adult since it wouldn't really lead to... anything. :\
I am 100% sure that, if I wasn't on my ADHD meds I wouldn't have even brought it up. And that's another thing... my psychiatrist keeps telling me improved social skills aren't really meant to be a part of my ADHD meds, yet it's among the biggest effects I notice...
Especially when I'm dealing with "officials" like doctors, cops, etc, my heart is racing, my eyes are darting, I'm basically pushing through panic to be able to accomplish whatever it seems like I'm supposed to. For whatever reason, ADHD stim meds make that process much less difficult to deal with while remembering anything else. I'm not one to rock in public, but I know I'll be wide eyed and speaking quickly and very much in distress, but decades of masking to get through mean I DO have capability to get through, and that's basically all I keep telling myself.
I feel and understand your pain so deeply😭❤️❤️❤️ I cannot tell you how many doctors appointments have ended in utter chaos, with me in hysterics, making no sense, crying and increasingly frantic and in a frustrated rage and sorrow, that the person/persons in front of me are looking at me like I'm crazy and possibly on drugs. Seeing it in their eyes and hearing it in their tone of voice and words. It is devastating and resulted in me for years simple not going to the doctor or to hospital at times when I really should have.
I still experience it, especially if I have to be there for a longer period of time. I aaaalllways end up freaking out and to the putside world it may seem like it is out of the blue! But they of course dont see or feel the building up of mayhem inside of me. - though I always have found that strange and really enoying (are they FRIGGIN MORONIC FAKE A.. DOCTORS IN STOLEN WHITE COATS!?!!!?), as all the signs are there if they actually paid attention!!
I HATE doctors and nurses (though nurses can sometimes be nicer & brighter than the "high and mighty's") with a passion. I have NO trust and NO respect for their titles anymore. If they font treat ME and my "situation" with respect, empathy, professional curiosity and dignity, then they are useless to me. I know what is to come and how it will end, with me feeling crushed, humiliated, confused, angry, in floods of tears and shutting down completely.
From meltdown, to shutdown, to emotional exaustion lying curled up in the dark for as long as it takes to put back together the pieces of my broken body, mind, spirit and soul and trying to accept that whatever ai went to the doctor for in the first place, remains unresolved and that I will have to try again when I feel I can cope with another (most likely) patronizing doctor rejecting me all over again..
So yes, I really do understand and feel your pain❤️❤️❤️❤️❤️❤️❤️❤️❤️
Doctors do get a lot of attention and drug seekers, so I can understand their skepticism, but it's fair to say they don't know so much about this. Of course I'm from a different country so different attitudes. My partner is a doctor (and quite skeptical) I think she comes at it from the point of view of "you won't be a public health priority, and what's the point? (unless you need medication)".
For what it's worth I haven't been through any of this, I haven't had the confidence to take it anywhere..
Great video!
*Fist bump* from this 53y Aspie.
Thank you Stephanie I thought that I was alone dealing with this?
I hate talking to doctors in general as a woman but I hate even more talking to them about psychology stuff because the whole thing is that they’re not specifically trained or educated about it. Like why do I have to talk to someone who isn’t trained to determine if I can go see someone who is?
Omg I love you girl! This is soooooo relatable!!!!
I am planning to ask my psychiatrist about going for a diagnosis. I've already spoken with my therapist and she did agree that indeed I seem to have some Asperger traits. But she isn't trained in this kind of diagnosis process and she said there are other places and my psychiatrist should know more details.
What a horrible experience. I am so sorry you went through that.
Oh my god, this is so disgusting. A urine test for a drug screen? What insanity. I can so relate to the disbelief and your inability to cope. I'm lucky in that I have the best primary care physician I've ever had, though there are no autism resources for adults in my town. I can tell how hard it was for you to share this painful experience, and thank you for doing so. People really need to understand how hard it can be.
Here are two things everyone in your position needs to know. First, the ADA gives you the right to request reasonable accommodations and the US Dept. of Justice takes violations very seriously. So when you make your appointment(s), follow up with a written request for your accommodations and send it to your doctors office via certified mail with return receipt. Make sure to start with "Under the Americans with Disabilities Act, I request the following reasonable accommodations." Then make a list of all that apply, for example: 1) Do not use minimizing language. 2) Do not touch me. 3) Have someone present who has been trained to recognize the symptoms of autistic meltdown. 4) etc. 5) etc. Second, bring someone with you as a witness. If any of the health care providers do not respect any your accommodations, contact the US Dept of Justice and file a complaint ASAP. It's easy to do. Just follow the instructions on their website (ADA dot GOV). I guarantee they are going to treat you with the respect you deserve once you have the Feds backing you up! Just make sure to make request in writing and have a witness. Else it will turn out like traffic court when it's your word vs. the cop's word.
Ugh, that doctor's visit is my worst nightmare. :( I had a terrible feeling about the urine test and knew what it was for before you even talked about it being a drug panel. :( I wonder how doctors aren't more curious than they are(n't) sometimes, or they assume the absolute worst. Isn't it their job to continue reading medical books or take up-to-date classes so they can help as many people as possible? I hate when people get sketched out super easily, too. Reminds me of my gynecologist, who's basically just as bad, and I've only had him try to help me with depression/anxiety that spikes around PMS times.
I'm sorry for your horrid experience. Ive heard you mention in another video you strongly feel we need a lot of education here in the states about what autism is. I have to strongly agree with you, especially after your story. Perhpas you're the one to educate the world. :) Its a lot to ask but you sure seem to understand and be able to convey the huge void in understanding.
I love my therapist and he helps me with my cptsd. BUT I really think I do have aspergers as well..he says he doesnt see it. I felt like I hit a wall bc if he doesnt validate it who would?
That's the frustrating part about this stuff for sure. A lot of times you may be working with someone who isnt really all that familiar with certain things bc they dont specialize in it. It's up to you if you want to seek a second opinion on that matter, but I can definitely understand why that would be difficult
@@StephanieBethany I definitely do want to be checked out by someone else. I guess I'm just scared of having this experience again. I've been searching google about all my experiences and it's all leading to this. Being very transparent ( too honest it can be offputting ), understanding social rules like I read them in a textbook, fiercely loyal and black and white sense of justice, head/skin scratching that I just realized could be stims. If I made friends they were almost always men. Women confuse me because they're not usually direct.
The list goes on. I think you know what I mean.
Hearing this situation makes me anxious I can't imagine how you were feeling 😳😢
I've already experienced a similar type of disrespectful and unprofessional behavior from the medical doctors etc. They make us feel like we're a nutcase or we don't know what we're talking about regarding our own health concerns! 😳😥