Hey!
If there’s confusion related to the title,its just a reference that the system has won, I lost, once again.
So my paid for professional diagnosis is done for now, I am refused the official recognition as an Autist. It’s all still there though.
I am livid. And empty.
I guess it’s my fault since >40 years of adapting and masking can make you too social, that’s what it broke down to. I am friendly and open and excel at masking.
They don’t see the price I (we) pay.
Apologies for the rant. I need your support.
I understand the lack of recognition hurts. But on the bright side, you now have documentation that you are not to be targetted by lCE when they start coming after aut people.
Haha, yeah but I’m safe in Europe (I think, at least!!). Yes, in the US I would hide it.
I’m sorry you experienced this. My assessment had the same outcome.
I find it helpful to remember that diagnostic assessments are set somewhat arbitrarily and are more concerned with the question “do these symptoms negatively affect your life to the extent they need intervention?”. That question is purely subjective and isn’t reflective of you.
This is really important to remember. The diagnosis is that your life is sufficiently disordered to need meaningful accommodations or support due to your autistic traits, not whether you have autistic traits. And whether you need accommodations or support is entirely a judgement call, being made from someone not living your life.
Thank you. However the voiced outcome made me notice old wording and leads me to suspect they’re not on the current scientific standard. So I can accept a negative (as in diagnosis) outcome but it needs to be based on facts. And the ones they told me aren’t used anymore.
So I need it written to criticize.
I work in the field and am constantly shocked at the number of otherwise skilled practitioners that have a huge blind spots for autism, especially mild or low support need individuals.
The thing about masking is that it can also hide “impairment” so a good diagnostician should ask about the ways you might mask and the physical and emotional costs of the masking. Sure you can socialize with the best of them, but are you a hollowed out shell at the end of the day? Does the masking leave you with zero resources for your hobbies, less capacity to deal with stress, and burnout? High maskers tend to have higher burnout because they are working hard to function in a world that expects them to appear counter to their nature. All too often someone can appear to function typically but a few times a month or a year they have epic drops in functioning and can’t get out of bed or leave their dark room. They’re diagnosed with depression, which admittedly can be exacerbated by burnout. However, treating burnout with depression coping skills might miss the mark. Anyway, this is a huge frustration for me professionally and I’m sorry you are dealing with it.
Thank you for your acknowledgement.
If you know someone knowledgeable in Germany let me know. Having read a few recent books mostly on adult autistic women by themselves I somewhat need to conclude that there is currently a big blind spot - as you said - for the mild and low support needing.
But as an autor stated, we still need support. I would even love to change my field of work to support this but whom should I reach out to?
Analyze me, I am a very curious case!
Oh and a thing I noticed: do you know the book a fields guide to earthlings?
He describes the neurotypical communication. And regarding my diagnosis I have to think of that so much: my words weren’t enough to carry enough weight over the NT impression of my routine masking.
Like he tells me he is miserable and can elaborate exactly on why (I mean isn’t it awesome I can give you all the on a silver platter?) but I look friendly and social: well he seems normal!
So we communicate with the words as content and for NT that is just a small, sometimes negligible part.
I’m not in Europe so I don’t have a whole lot of knowledge about the healthcare system or how to direct you unfortunately. In terms of books I like Devon Price’s Unmasking Autism (one of the best for describing the experience of adults on the spectrum) and for younger AFAB folks I like Spectrum Girls Survival guide. I have skimmed and liked Field Guide to Earthlings but haven’t read it completely.
Also it’s a small organization but Autism Learning Lab is building some nice resources and education. I still believe a full formal social developmental assessment is helpful, but it’s expensive and if you don’t find the right practitioner they can still miss the boat. I tend to advise people to ask a lot of questions about their clinician’s expertise and experience with autism. Learning subtle signs beforehand and asking if they are aware of the “pink flags” etc. described here could help.
Thank you!
So far I’ve seen a lot of videos (public TV has some good ones) as well as could it be aspergers by prof Tony Attwood, and the Ted talk from Jac den Houting. The videos from Auticate are also quite relatable although with a lot of repeating and corporate orientation.
Books so far notable aside from a local one (Autismus in 44 Kapiteln) the mentioned field book. Although that one is a little bit dry on his views, I think the NT view is a little over complicated with references and symbols and could be made simpler without losing anything.
Then the more notable book for my situation is the autists by Clara Törnvall and I am also currently on another one by an adult Autist woman Autistisch? Kann ich fließend! by stephanie Meer-Walter.
I will then possibly try unmasking autism next, had an eye on that one. Thanks also for the link.
For the next diagnosis (if I can’t turn the last one around) through that experience and also help like yours I’ll have a far more specific questions prior to the diagnosis…
I have experienced the fatigue toward the end of the day. After a full day of work, I would be depleated. Before figuring out I’m autistic, my wife would call me before I left work to come home, and ask me to stop at the store for something she needed. I was always resistant to make that stop, and now I understand why.
I am older, and don’t think I need any accommodations or help, so I didn’t think a full evaluation would be of any value. I took some online tests, and chatted with other autistic people, and determined I’m autistic. I’m seeing a counselor figuring out what is in me due to being autistic, and what am I masking. Focusing on discovering and understanding. This path has revealed things in relationship with my wife, we have a better understanding of our differences.
Thank you for that, it gives me more inner peace about what I am. Stil, l I am doing this for multiple reasons but will have to see if I can go further with them.
In my relationship we’ve hit some walls in my capabilities and accommodated for that but if I may ask - is the counselor neurotypical?
No, she not neurotypical. I’m not fully sure what her story is, but she’s mentioned being atypical, divergent, and having anxiety issues. It’s pretty good having a counselor that is divergent. My previous counselor wasn’t, but his wife worked with autistic kids in the high school, so he must have some knowledge, but it felt like there was a slight miss on the specific autistic perspective. I’m not sure if someone that isn’t atypical would have the perspective I’m looking for in counseling. It probably depends on the counselor, and I don’t know how you would determine that without going to the counselor.
Ah damn I hoped for a different answer, this just makes me all the more sceptical with neurotypicals doing diagnosis (not at your fault!)
Good you found someone!
I’m sorry to hear that. It’s not your fault, it’s that whoever assessed you did not have a good understanding of autistic masking (nor how difficult it can be to stop masking once you’ve been doing it for decades - it’s not like there’s an on/off switch…).
Thank you
Why is official recognition important to you? I guess there might be better medical support available?
Medical support is not what I need, nor any disabled status.
It is however a sort of legitimization, mostly for all around me that I am not lazy nor unwilling but I am not able to do better. I am still trying hard. Without this, there’s always doubt for the neurotypical that it could just be laziness or unwillingness this time, or more often…
It’s recognition.
(edit: nor -> not typo fix)
From one internet stranger to another: you are valid. For the naysayers no amount of official recognition would matter anyway.
EDIT: Your anger is also valid and justified.
Thank you!
Also without the edit.
Last week I talked to my first official known autism ever and found so many things understood it was heartwarming.
For people who accept autism as a valid reason for not having your life perfectly in order, an official diagnosis won’t change anything.
For people who don’t accept it as a valid reason, an official diagnosis won’t change anything either.
I’m undiagnosed myself, and I’m not even seeking a diagnosis because it wouldn’t change anything for me. A piece of paper confirming that I’ve been dealt a bad hand doesn’t make me feel any better. The cards are already on the table - I can see them with my own eyes.
Also a good perspective. However it also covers support in Europe so maybe I could get support so that my family doesn’t have to pull my weight fully, so to say.
Oh and also in case something happens showing that you’re Autist could help because the reaction could be misinterpreted. Fair - this could also be done without diagnosis but seems a bit silly if they then see it’s officially not the case.
So personally, I’m not seeking the diagnosis. AuADHD is hard enough to experience, I don’t want people to also be able to use it as an excuse with me. I know my limits.
People have asked me for years, assumed I was, and when my ASD friends find out I’m not diagnosed are legitimately shocked. For 20 some years I’ve been in denial about the extremely obvious signs because I wanted to fit in.
I have a very hard time accepting anything, but I have a harder time rejecting clear patterns, evidence, external observation, and introspection. Honestly, thats been more valuable to me than a diagnosis. The diagnosis would just confirm what I know, not how I’m going to go forward.
So instead I can ask a therapist directly: “how do I stop wasting energy trying to fit in, when fitting in is expected?”
I can cope as stated in other answers but I need to know the facts. Is issue ‘A’ just a given and needs to be worked with or can it be changed?
This is also what I am looking for.
That makes a lot of sense.
Understanding makes me happy!
Can you apply again or dispute? Im myself going through some expensive assessments now with different specialists (around 2.5k usd) to apply then for official status. Idk whats your level i got mine level 2 and psych kinda joked said that when i just sit in front of commission they wont have much questions but im still bit worried i would be so pissed if they wont give me status with payments
Since it’s my own private order at the hospital I can basically do what I like, yeah. I’m not sure complaints would change anything though.
But I am talking about the result with another professional and possibly he can give advice which helps.
Oh so it was a private specialist and you can just go to another?
It is a public clinic in Germany where you also have private paid personnel.
Yes I could pay as often as I want 😅. If it were an appointment covered by phs they of course wouldn’t cover multiple tries.
that really sucks. sorry it didn’t turn out in a way that matches your lived experience.
are you by chance also high IQ or INFJ?
i read and heard in autism podcasts that people with certain above average perception sometimes begun masking so well and from such an early age that it seems to others (and sometimes to themselves) that the mask is part is their core nature, as opposed to simply second nature. this is part of the effects of 2E (“twice exceptionality”; the name is problematic, try not to fixate on it)
Never heard of INFJ, thanks. Reading up on it I can relate but I am in general of a far too bad opinion of the public (aka see where that brought us) to having a drive for ideals. I do have the opinion I have solutions though. I short: I don’t think I am.
Well IQ on the high average likely buuuut measured in neurotypical of course.
The irony of it all is that I see the layers of the misunderstanding in diagnosis which again is the result of me being an Autist leading them to see me as a NT.
But communication is the bane of us. The worst part is they think they understood but they never listened to the words’ content but combined the ‘fast access symbols’ in their head to build an opinion.
