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.
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.
https://pubmed.ncbi.nlm.nih.gov/34121610/
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.