Adult diagnosis?

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Hello friends. I'm new here. I do not know where else to turn. I am at my breaking point with my husband and my family. Our 3yo son was diagnosed on the autism spectrum Dec 2018. We knew it was coming, but I was still crushed and very depressed for 2-3 months. During that time, it became very clear to me that I too, was very obviously somewhere on the spectrum. It explains every weird thing, idiosyncrasy, positive and negative quirk, and the myriad of mental illnesses I have been diagnosed with during my 34 years. I cope with my symptoms and behaviors every day and I also deal with my mental illnesses every day, including seeing my therapist 2-3x/month and taking multiple medications daily. I am religious about my therapy schedule, daily medication, and self-care practices. It's a lot to cope with, on top of "normal" life, including working more than full time, 2 small children, and my marriage.
My husband does not believe I am on the spectrum. I have explained to him in all sorts of different ways that I know this to be true, but he tells me to "stop self diagnosing." I've been at this whole mental health thing for 18 years, counting from when I was "officially" diagnosed with depression due to extensive self harming in high school (a "friend" turned me in to the guidance counselor, then proceeded to tell our classmates I was trying to kill myself, which was both inaccurate and hurtful). My family has never seemed to care much about my mental health - my mother doesn't "believe" in mental health, even though she has significant mental health and behavioral issue that I think also stem from being undiagnosed on the spectrum. Her bad behavior and emotional abuse are never her fault. Now my husband says he'll only believe me if I go get diagnosed by a doctor. Until then, all my complaints and difficulties apparently do not matter. It does not matter what I say to him, any way I describe how I'm struggling daily, or any evidence I present to demonstrate my belief that I am on the spectrum. He tells me that if I'm so sure, it should be easy to just go get diagnosed and then we can get the support I need - but until then, he doesn't believe me. My whole life I have felt like no one believes me about anything, but especially how I struggle every day to cope with life. People just think I am lazy or stupid or both, or at least that is the way it seems to me.
I have no issue with going to get diagnosed. After a lot of searching, I have found exactly 3 doctors that are in our insurance network that might be able to diagnose me, but I would have to call, and I hate calling places, especially if I think I'm going to be told no, or I'm crazy, or whatever else. I have tried to explain to my husband the difficulties of adult diagnosis, and he just tells me I'm wrong, it's easy, just call, go to the appointment, and that's it. I especially hate being told I'm an idiot when I know very well that I am not. In fact, I'm extremely intelligent and relatively accomplished in my life, especially given my struggles with mental health and no support whatsoever for the social and other difficulties I experience.
I am fed up and so angry. I don't know what to do. I am afraid to tell anyone else that I suspect I am on the spectrum, even my therapist and psychiatrist, because I feel like they too will tell me I'm wrong or that it doesn't matter. I think it especially matters since we have a child on the autism spectrum. But I mostly just feel like an idiot right now. Whenever this topic comes up, it always ends in a blow up argument with my husband, because he tells me over and over he doesn't believe me, to stop self-diagnosing, and I end up screaming and freaking out because I am so upset. This is apparently NOT a symptom of autism or my frustrations, my husband just treats it like I am an unreasonable person who is very "sick" - but it couldn't possibly be symptoms of autism. He only believes that I have depression and anxiety. Because those are my diagnoses. So obviously those are the only things that are true. I work hard every day to be "normal" and not to show anyone I am struggling, like I have always done. I feel like I am always acting. I told this to my husband and he just shrugs and says "go get diagnosed." Since our son was diagnosed, I have done extensive reading and research - something I'm really good at. But it doesn't matter what I tell my husband I have learned. It doesn't matter when I plead with him to please, believe me, try to understand me. We are in marriage therapy because things have deteriorated so badly in our lives. After we had gone to about 6 sessions with 3 different therapists (one I didn't care for, another left her practice, and we are finally with a new therapist), he told me that we tried therapy and it didn't work. I just wanted to scream at him, 6 sessions with 3 therapists is not proof it doesn't work. Our current therapist was accepting when I told her I believed I was on the autism spectrum. But that doesn't seem to matter to my husband. I'm just SO angry and I don't know where to go from here. Obviously I'm going to have to try to find a doctor to diagnose me so maybe someone will take me seriously. I am so sad and depressed over the whole thing. But I have to keep acting normal. I am exhausted and I am angry. I just want to give up and get in bed and never get out. After our son was born I had horrible post partum depression - my husband didn't believe me until I didn't get out of bed at all for 3 days straight. I feel like that is what I have to do for him to take me seriously. I literally do not know what to do. I have been trying to tell my therapist for months about how I feel but I'm literally so scared of her rejecting me or laughing at me or telling me I'm wrong. I've been seeing her almost 4 years but I am just so scared for another person to tell me I'm wrong about my own self, wrong about things that only I can know. Today my husband tells me he DOES believe me. After over and over telling me he'll believe me when I get diagnosed, because only a doctor can know....I told him I know gaslighting when I see it, but it's somehow still my fault. I literally do not know what to do. My anxiety is out of control because I am afraid my husband and mother are going to try to involuntarily commit me, like my husband has threatened before. I was inpatient once when I had postpartum depression for less than 24 hours and it was so traumatic that I nearly have a panic attack when I think about it, let alone have to talk about it. Everyone just wants me to be normal. I'm not normal, but no one believes me. Anyway, I feel like you all are the only people that will understand. I don't expect any solutions, I don't think there are any. I just want to be taken seriously for once in my freaking life.

That would drive me nuts too. In fact I was nuts because I was not diagnosed for years and no one believed me either. I dont know why people are doubtful when someone believes they have autism. Maybe just go to the doctor and get the stupid diagnosis if your husband doesnt believe you. Just get it over with. You might feel better. I wish that your husband was more supportive of you and Im sorry people are like this. Also, your therapist wont laugh at you. Its her job not to judge.

Dear Tam,

My heart goes out to you. I was only diagnosed being in the spectrum during treatment for PTSD. Lived most of my life being the "different" one surrounded by family who treated me with skepticism and mocking. Them my ex-wife took advantage of my weaknesses and used my triggers to get inside my head. So again, my heart goes out to you and am here to offer my support.

I have some idea of what you are going through.

My parents never believed me, and my mother was in denial. I told them something was wrong and that I suspected ASD. They sent me back to college (this was after I had a "mental breakdown" and quit my job and failed some classes). Naturally, I flunked my classes and dropped out.

My mother was still in denial even after that. I had to save Christmas and birthday money for two years just to get some insurance and go and see a psychologist.

I finally got diagnosed. My mother's response was "why didn't someone say something years ago?" I was obviously not happy with that response, but I didn't say anything.

It is true that only a licensed psychologist can give a diagnosis. But your husband is wrong about it being 'easy.'

First you have to find a psychological firm that does that sort of thing. Then you have to go through testing. The psychologist will do an interview to get your life background and determine if you need testing. Then there is the testing itself, which consists of exercises with someone (to measure your interactions). And then there are some self-reporting tests where you answer a bunch of questions.

Then there is the follow-up. The psychologist will go through your psychological evaluation and tell you your results.

As far as getting services go - that depends on the state you live in. I live in Tennessee. I tried getting on TennCare (Medicaid). The system was absolutely terrible. We can no longer apply and the Human Services office. We have to call a hotline.

When you call the hotline, a robot answers and tells you to press some buttons. After pressing the right buttons, they ended the call. You have to press '0' and be on hold for a very long time before speaking to an operator.

Ultimately I was told to apply for disability. I did, but my claim was denied, despite ASD being listed by the SSA as a disabling condition. I'm currently on appeal and have a hearing in June. All I can do is hope they approve it.

I'm selective mute and I don't use the telephone either. I don't like initiating any calls. I arranged my ASD assessment entirely through email. I found the doctor I wanted and emailed her directly at the University. She replied via email, arranged our appointments and sent me my Developmental History package all by email. I returned it to her by courier. I didn't hear her voice until the day of my assessment when I arrived. (Incidentally, this was a year ago last April).

Most facilities have websites with "Email for Information" options, or something of that nature. If you know the specific doctor's name you can also find their email address on your local physicians' registry which should be available online.

I recently used "email for information" links to connect with my new therapist (last week), and my new OT (today).

I don't do telephones and I've never left a voice mail message in my life. Realise most doctors don't want to do telephone either, and receptionists would much rather respond to an email in their busy workday.

Option 2, if you can't find their email address. Leave a voice mail message at night when they're closed. Write it ahead of time so you know what to say. Explain that you are looking for information for an adult assessment and you're nervous because you don't know how to start. They will reply, and you won't have to initiate the topic or figure how to word it in conversation.

Good luck!

after 11 years with me, my ex husband still doesnt believe in autism (ya, i can imagine a LOT of nervous hehs out there). while he himself is on spectrum too, clear as day xD waving hand about phone calls. had been my personal boogey, among other things, throughout lifetime. if its easy for ur husband, maybe he should "just call" on ur behalf? xD thats what i tell my family when they start bitching. though ofc, Isabella has posted a better option, so that was just a quip. as u can see, many of us have problems here. and tbh, what is more important than being officially diagnosed is, knowing what u need. u dont need a label as much as u need stimtoys. (tho, a label would be cool. i have no options for that, living in a f*****g ret*d country). so just, before u even get on with diagnosis stuff, suit ur needs in stimming. that allready makes one's life tons better. and suddenly quite a few mental deseases do subside, when u start dealing with ur real autistic special needs. im sorry, im barely literate now. right out of a shutdown. so well, go read articles there are on main page. they are really illuminating. and hold on. what is happening now is surely stressful, but its actually the upcoming improvement. just get over that edge)

Thank you to everyone who read and replied. It's a little less hopeless know I'm not alone and that there actually are people that understand. I still so angry - it's easier than being sad and depressed....but I guess it makes me seem crazier. My husband has allegedly made the "one" phone call it takes to get an appt for a diagnosis....he says he'll "keep me updated"...I've been in bed all day since I got the kids to school and daycare. Luckily I work from home. I'm so glad I found this site. Thank you again to all who shared.

He will keep you updated? Please ensure that the doctor contacts you directly. I doubt they would arrange an appointment for an adult through another person, unless they are your legal guardian.

If you don't hear anything I suggest the email / voice mail route.

I'm so sorry you're going through this! From what you've said, it sounds like your husband is not treating you well at all. I hope you are able to get assessed.

it is possible for a family member to act on behalf of another family member, without being legal guardian. yes, at some point the middle man has to stand down, but they can help. and yes it IS totally and terribly frustrating when family refuses to understand how it feels like. please believe me, many of us here know that feeling. some know it much much more, than is bearable. in coming months u will find just how many problems in ur life become less, when u start taking care of ur needs. like well, i had known what i am for a long time, but i never knew what i have to do for myself. like stimming. this country is just overrrun with curbies and denialists. so 31 years of my life i spent in a metaphorical cellar. and many other ppl here are privvy to this pain, even as degree can vary. u are taking a journey many of us are further on. and u are welcome to all the help i can give. and (a bit late saying) welcome to wrong planet.

So I finally told my therapist that I think I'm on the autism spectrum. She gently informed me that sometimes, when we are really into researching something, we think we have it, but it's not true. I've only seen her once in the last 2 months, way less than normal. I see her again next week. I'm thinking of quitting but of COURSE I can't even fathom telling her that. What I really want to say is F you, you're JUST like everyone else! I guess I'm going to have to go through with getting an actual diagnosis, which seems wasteful (we're in soooo much medical debt for my son's therapies and of course, my massive student loan debt) and pointless. It's not like once I am diagnosed, I can just be like, oh, well, I'm autistic, to everyone I encounter. I also can't fathom telling my family. They either won't believe me, won't care, or some other hurtful variation of not accepting and supporting me. It won't change anything. It feels like the only options are to totally shut down which would inevitably lead to losing my jobs and my family's health insurance or to go full disclosure to everyone I know and be totally open and honest and even forceful with the fact that I have suffered for 34 years in silence and ignorance. I also don't necessarily think having an official diagnosis will help me cope - I have a psych NP that manages my meds that I like a lot. I guess I could get a new therapist, but that seems crushing and overwhelming. I don't know what else I could possibly do that would help, assuming anyone even believes me. I'm SO overwhelmed and all I want to do is lay in bed and cry because no one else can deal with this but me and even if I do, it might not even matter! It's cruel. If anything, I feel that I must do this for my son, so that I can understand myself and him the best way possible and be the best mom I can be for him. Why does it all have to be so hard?

I'm sorry it's so complicated. What happened with the person your husband contacted, regarding an assessment?

Dear TamJam

I just wanted to let you know that you are not alone, and I recognise much of the fear and anxiety you describe of being dismissed in something that fields right for you. I have an appointment at my doctor next week as I want to be refered to someone that possibly can diagnose me. I'm terrified. My head is plotting defense speeches all the time, for those who will dismiss me. But I signed up in this forum to be able to write this post about something else:

You seem to be under extreme pressure so I just want to tell you: when it sucks and hurts and when life feels endlessly uphill, it's okay to sit down and catch your breath while feeling miserable It seems like you been through much and I believe you can handle this too

Mariel

I will make a few suggestions for what they are worth.

First off, when I told my wife that I was an Aspie, she adamantly refused to believe me. It was almost like a trigger to her. I did a self analysis and an on-line AQ analysis and I listed the Aspie traits that I had, so I am fairly self-confident of the assessment. And as far as my wife is concerned, I just don't discuss it with her.

So here are the suggestions.
1. Take an on line Autism Quotient (AQ) Tests and print out the results. Here is a link to one of many on-line tests. AQ Test
2. Make a list of all the Aspie traits that you feel you exhibit. This will be of use if you ever visit a psychologist to have an official assessment.
3. If you decide to get an official diagnosis realize that the traits expressed by females can be very different than for males, so you may want a psychologist that specializes in diagnosing female Aspies.
4. Piggyback off your sons diagnosis for treatment options. From my perspective the current treatments for Asperger's are generally poor and ineffective. Most times they treat the problems with prescription drugs. And since you are already in therapy and taking these drugs, they may not dramatically help your condition.
5. Many of the problems that Aspies face are caused by excessive stress. There are therapies that can be very beneficial for you but they are not Aspie specific. They are therapies that focus on eliminating stress and bring the body back into a state of homeostasis (the tendency toward a relatively stable equilibrium between interdependent elements, especially as maintained by physiological processes). Many Aspies have stated this type of therapy have been very beneficial for them. To get you started in the right direction in my humble opinion, I will recommend a book called, "In An Unspoken Voice" by Peter A. Levine.

Thanks everyone. It is so so hard not to feel totally alone and like an absolute loser who can't just get her s**t together. At least know I know that's not true - but it still hurts. It shouldn't have to be this hard! My husband, of course, never got back to me about the dr. he contacted. We're also in marriage counseling and we go Thursday and I know it will be brutal. And probably pointless. I'm just so sick of not being believed and having to be my only advocate, on top of advocating for my son, taking care of alllll the appointments for him, working 3 jobs (1 of which provides my entire family with health insurance), doing ALL the laundry and dishes with no help, and a hundred other things. Thank you all for listening and offering your advice and suggestions - just gonna keep plugging away at life, that's really all I can do.

My psychiatrist recommended I'd get testing when she diagnosed me with Aspergers & gave me a number to call. I was told I needed a referral when I called so I told my psych this & she referred me. Perhaps you could get the person who prescribes your meds to help you get an appointment. Also be sure to mention how your son was officially diagnosed. Autism can run in families sometimes. Autism was ruled out when I was tested in favor of other things which I do have but they don't explain the whole story. The person who diagnosed me was a quack who didn't ask me any questions about social skills or how I was when I was little. I was also told by him & my psych that I could only be diagnosed before I was 21 cuz in order for it to be autism it has to occur before your 21 & the only way they can know for sure that it did is to test you before your 21. I also could not get on waiting lists for autism specic services after I was 21. Autism awareness where I come from is pretty sh!tty & even the so-called experts think of it as something like Rain Man. After joining this forum & doing a lot of researching, I'm pretty sure that I am on the spectrum & believe I was misdiagnosed by a quack when I was tested for it. I don't think having an official diagnoses would help me any at this point cuz my GP believes I have it as well as Social Security when I get my disability reviews & they send me to psychs(I'm on disability for lots of reasons & I don't feel autism is the main 1s). Anyways getting an official diagnosis may not help you much & it is entirely possible for the experts to be wrong. It totally sux that your husband isn't being supportive & helpful. Maybe it'll help to try explaining your issues to him without using the autism or Aspergers terms like try to understand why us autistics have the issues we do & explain those reasonings to your husband. Unfortunately this may not work thou & if it doesn't there really isn't much you can do about it except suck it up like you've been & maybe reevaluate if you want to stay married to your husband or not. I think going to couples counseling is pointless if they don't understand you & your husband isn't trying to make things work. Luckily my girlfriend belives I have Aspergers. Her brother was diagnosed when he was little. We suspect she's also on the spectrum but her counselor demises it. She has various issues too & what's important in our realtionship is that we both try & be supportive of each other. The specific labels do help us know what's going on & would help her get better medical treatment but what's important is that we both try to understand each other & help each other regardless of what labels we have.