This long assessment period is torture

[Solphire]

I am a 38 year old female and I am currently undergoing a period of therapy before my formal evaluation and assessment for ASD. I was previously (mis)diagnosed (at 16, right after my mother died) as bipolar, but my mind has always rebelled against that being it.

My GP says she never saw bipolar in me, but she does see ASD. I then saw a video of an autistic woman speaking, and it was my own testimony coming out of her mouth. I have always felt like an alien, with no one ever understanding me or where I was coming from.

All my struggles and confusion throughout life; my strange childhood issues, my social deficits and masking, my emotions(and somatic sensation of them), my sensory sensitivities and overloads, my obsessive interests, my routines and restricted behaviors, my abundant stimming, my asexuality, my logical mind and literal thinking, my hyper-mobility and my painful ligaments and joints...and more and more. Everything. Everything makes sense to me now and I am vastly overwhelmed.

It has only been a few weeks of therapy, and I still have another month (4 sessions) at least before seeing the actual psychiatrist. Really, all I am doing currently in the therapy is reading and going over my 40 pages of writing that correlates to my GP's hypothesis.

However, it feels like torture. I am (finally) exposing the inner workings of my mind and my being, and as result I feel great uneasiness and embarrassment. Sadly, this is my 'deep interest' at the moment and I am having an extremely difficult time focusing elsewhere. I try, but I just keep ruminating. I find myself needing the strength to endure this whole process.

I am looking for someone who can relate and share their experience of having gone through the long haul. Did you go crazy by the end? I am extremely fearful that they will not know how it presents in adult women, and will merely give me more labels (Bipolar, BPD, OCD, ADHA, Anti-social, SPD, etc) that will not benefit me or assist me in getting the help I actually require.

Thank you for reading my wall of text. I feel like I can not rest until this is over. How will I make it? How did you make it?

 

[Streetwise]

to be candid I was trying not to kill myself,didn't even think anybody would be trying to diagnose me with autism at the time ,then the word autism was mentioned with a modicum of respect ,after that time I was trying not to have mind numbingly nightmarish panic attacks ,nothing to do with autism diagnosis ,then five months after they had sent a referral I was going for diagnosis, a good idea would be to look in the top right hand corner typing autism diagnosis into search ,what was happening to me is not extremely common. as usual I got irritated not knowing I was autistic and thinking why did they say three months to wait for a referral ,now know it can be six months at the shortest to 2 years ,oldest person to be diagnosed 83 years ,i'm in the north-east of England ,there is a specific autism diagnosis team, surprised they actually said it was autism.

 

[Pinkie B]

Hi and welcome!

Sounds like you're having a tough time. But you're not alone anymore! You're not an alien...or if you are, we might be from the same planet (cuz I know I'm an alien). It may seem like a long time to wait for your diagnosis, but you've waited 38 years! You can do this!

Pink

 

[Suzanne]

It took me close to 10 years to seek a diagnosis, due to my fear of being laughed at.

It took two month ( appointments) to receive my official diagnosis. I am grade 2 to 3 on asd spectrum. 3 being severe.

I hear you, with regards to the major sense of procrastination and probably, I would find myself having meltdowns, with the insensibility of it all.

Ok, not a "professional", but you certainly seem a clear cut case lol

Every aspie goes through being obsessed when they find out about aspergers.

I once phoned an sos and spoke to this female who told me that aspies are the best to diagnose, because of how obsessed they get and know a heck of a lot more than so called professionals.

 

[Solphire]

Thank you so very much for your responses. It is wonderful to not be alone anymore. I enjoy reading these forums greatly, and it is comforting seeing others who phrase things in the same ways as I would, and sharing similar experiences and struggles. I truly feel like I belong here. This is a first time, in my entire life, I have felt that.

 

[AloneNotLonely]

Cluster B is a pretty stupid mistake to make. Cluster A, however, is pretty similar. Autism looks extremely similar to Schizoid PD.

Asexuality certainly is the opposite of Cluster B. Those people are all... uhhh... highly promiscuous. I wouldn't care too much about what comes out of it, they can be wrong, you know. Even if they said Schizoid, there's barely any difference. I wouldn't be surprised if there's a ton of Schizoid people running around that have been diagnosed with Autism and vice-versa. The only real solid way to distinguish is motor-issues and development as a child and we have plenty of careless psychiatrists (It's a doctor-thing).

 

[Jojo_LB]

Hi Solphire,

I actually just did the super long assessment on Friday. It took 6.5 hours. It was torture.

I decided to go with an out-of-network provider (so my insurance would not cover even half of the cost of services! I think it covered about only a third). The autism center that does take my insurance has a very long wait list and I probably wouldn't get assessed until next year. I was not willing to wait that long. I need it sooner because I may want to return to work before then, and I need the official diagnosis to request accommodations wherever I end up working.

I spent the extra money to go see someone I picked out myself. I am lucky and privileged that I could do this. I know that many others aren't in such a position.

I too worry that this neuropsychologist I so very carefully picked out will be a huge disappointment and tell me I'm not autistic when I know I am. I think many of us feel this way because we have gone through life pretty much masking and doing whatever we needed to do to survive, and by appearances we look well-adjusted. But no one knows just how much effort has gone into looking this "well-adjusted." The effort is such that we end up becoming almost non-functional (I'm almost 36 and I barely function now 'cause my brain has decided to give up).

It would be helpful to have parents or other family member(s) who knew how you were when you were a child so they can explain your past behavior to the psychiatrist. If you don't have any family members who can or are willing to do this, or you don't feel comfortable to bring any family members into this (I told my neuropsych I am estranged from my family, because I am. So I told her what I remember from my childhood), then they should try to work with whatever you can give them from your own memory.

History of your childhood is key in making the diagnosis. So tell them as much as you can. The psychiatrist will observe you during your assessment and should get a lot about how you communicate and socialize with them.

I think what really helped the most for my own assessment was telling the neuropsych about what I remembered regarding my uneven speech development, speech disfluencies, meltdowns (sensory overload, difficulties with communication, difficulties with sorting through strong emotions, having objects I got attached to taken away from me, not being allowed to control everything), hyperlexia, aversion to human touch, issues with emotional regulation, narrow, special interests, selective mutism, desire for isolation and poor peer relationships. Anything at all that you and/or a family member can recall about issues like these that you had since early childhood and adolescence, will help a lot. If you have that info, then you should get the diagnosis, no matter how you present yourself now. Because how you are now is a result of all the years of masking and adapting to a world made for allistics. Hopefully, the professional who will do your assessment isn't incompetent and knows the struggles of undiagnosed adult autistics.

I sought support in this forum and FB groups (I loathe FB but I still use it for the couple of support groups for ND folks.) as I went through the long process of self-discovery and self-acceptance.

Best of luck to you.

 

[Pinkie B]

I too worry that this neuropsychologist I so very carefully picked out will be a huge disappointment and tell me I'm not autistic when I know I am. I think many of us feel this way because we have gone through life pretty much masking and doing whatever we needed to do to survive, and by appearances we look well-adjusted. But no one knows just how much effort has gone into looking this "well-adjusted." The effort is such that we end up becoming almost non-functional (I'm almost 36 and I barely function now 'cause my brain has decided to give up).

I definitely appreciate that fear. It took me over thirty years from my first "symptom" to figure out that I belong with the other Aspies and once I figured it out I immediately decided to cling for life. I've spent a lot of time researching various psychological disorders because I've always been fascinated with how the brain can distort the world we live in. But of all the stuff I've researched out of curiosity, nothing fit the way ASD does. The final chord of the eureka fanfare was when I learned about female masking/camouflaging and I was like Oh! That's me! That's why everything is so hard!!!

Now I'm faced with the decision of getting a formal diagnosis or not. I know that my symptoms are not as intense as those who typically get disability and I know, because I've been doing it for 30 years, that I'm capable of functioning without special support, but I also know that I'm not "normal" and that I'm still playing life on a harder setting than NT's. So I'm afraid that attempting a formal diagnosis would result in someone who doesn't know me saying that my life is harder-enough than everyone else to get categorized as on the spectrum and I don't think I could bear a professional trying to tell me that I'm "normal." It would be an invalidation of everything I know about me.

(Schizophrenia has been my favorite disorder for years because schizophrenics are by all measures perfectly normal, rational human beings who just have this problem where their senses lie to them constantly, making them look "crazy" because they're reacting to stuff that exists in a separate world from everybody else. I bet if you saw talking tigers made of bioluminescent glitter walking down the street telling you they will eat you if you step on a crack, you'd be pretty jumpy, too. )

 

[Solphire]

Yes @Jojo_LB ! That is exactly how I feel. I am totally spent from the many years of extreme efforts to "appear" normal.

@Pinkie B I agree with you as well. I fear being passed off as normal. I would have been a decent actress, let me tell you! This is the reason I want the true diagnosis. Not only does everything make sense, but then I have something I can point others to, as I learn to mask less (to hopefully not masking at all). I want to be social and connect to people, but I lack the technology, as well as the caring to do so.

Can you imagine? I would have no more shame in having a deadpan face that does not mirror on it's own. I would not have to study their face and tone to try to understand what's going on (or the dreaded eye contact). I would not have to put all the effort in to fake my expressions and tone. I would no longer have to try to keep track if my body language is right. I CAN MOVE AND STIM without worrying if it making others uncomfortable. I can wear my earplugs without feeling like someone who is overreacting. I can finally let out my (strong) emotions without my family invalidating them as 'a mood swing'. I will have no more shame for having limited patience for outings because of social/sensory reasons, and the long time lying in the quiet dark to recoup (they thought it was depression, it is not. Just recharging) I would have the proper understanding I need for why my interests obsess me and control my mind leaving little room for nothing else. I do not have to feel bad for not caring about fashion and always choosing cozy clothes over those painful fabrics. And I could literally write a book full of more ways I could relax more in my own skin. If I do not seek my diagnosis, my family will just think, "oh she is just being weird or crazy again". At least my husband and church family already see it. I want to be okay with being myself, and let go of trying to be something I am not.

If you are Male reading this, perhaps you do not understand why we ladies try so very hard. The answer is simple. Women get labeled (and their existence invalidated) for not conforming to what a women 'should' be.
Unfortunately, most of the things that are expected of women are not ‘natural’ for me. It is incredibly difficult for me to emulate this, although I do(did?) try.

The labels of nonconformity:

Apathetic, Cold-hearted, Resting B Face, Bossy, Nit picky, Naggy, Know-it-all, Nerdy, Ditsy (forgetful and stupid), Awkward, Clueless, Emotional, Selfish, Frigid, Rigid, Prudish, Unfashionable, Ugly, Tacky, Meek, Antsy, Reckless, Obsessive, Irritable, Controlling, Easily Frustrated, Spacey, Overly-Sensitive, Excitable, Overbearing, Blunt, Rude, Obnoxious, Unnurturing, Unladylike, Silly, Childish, Abnormal, Neurotic, and CRAZY.

I have fought hard against the default nature of myself, trying (unsuccessfully I might add) to extinguish these labels. Insert EACH of these into this phrase, “a(n)_______woman” and you will have a fairly accurate description on how I saw myself, or more distinctly, how I fear other people must perceive me. This is why I try so hard with my masking.

The other main reason for getting my diagnosis is so that I can find others who understand, RELATE, and help me move forward.

 

[Running Girl]

Me, too, you guys. Just had a new Psychiatry Nurse Practitioner discount both ASD and EFD saying, AFD looks just like ADHD and also that I should have a workup for early Alzheimers (I did 5 yrs ago and was told I had ADD, and nothing more.) The nurse practitioner also said there was "no point" in worrying about diagnosis for which there were no meds to take. Then we both agreed that I was 'irritable', lol! I'm still 'irritable' about this incompetent *****.

 

[Solphire]

@Running Girl: I am sorry you had a bad doctor. There may not be meds to take (although there may be some that help our symptoms; I do not know, I am not a doctor), but there is help in identifying and knowing yourself. I am certain there are other non-medical therapies! The psychologist I found has already given me ideas and ways to accept myself for who I am. I am also hoping to find a group with others to whom I can relate after my assessment. I immensely wish to talk to another real life woman with ASD.

 

[Solphire]

Great news!!! My whole life and mind makes sense now! My doctor said that I am definitely autistic! I did not even get through half my writing yet. I still have more appointments to get all this baggage unloaded, but the hardest bits are done.

I am so so relieved. I never thought anyone would ever understand me, or even that I would ever understand myself. Guess I can now go pop on the introduction thread.

EDIT: thanks SO much for the responses and hope you have given me. It had been a long, dark month for me.