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Neurodivergent members

Autistic and being told to just listen to my body

Started 4 December 2025 · 14 replies · 127 hearts · read 2.4k times

TarqWindsor, UK · 4 December 2025
8 months ago

Autistic and being told to just listen to my body Writing it down partly to work out what I actually think.

This is a difficult one to write and I have deleted it twice.

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

The thing that has surprised me most is how much of this is about other people rather than about me.

I have read the guides here, which were more useful than anything else I have found, and I still have a question they do not cover.

Sorry for the length. If anyone has been here, I would very much like to hear it.

42

NixLeith, UK
#1

What helped was lowering my own expectations of the week rather than trying to hold the week together.

6

TobiasHamburg, DE
#2

My experience was very boring, which I offer as data. Some of us just get a dull time of it.

11

ObieNashville, TN
#3

Building on what the opening post wrote rather than answering the original question.

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

3

KikiFacilitatorGlasgow, UK
#4

Two things, both boring. First, none of us can tell you what to take. Second, the conversation you want to have is with your prescriber, and we can help you write it down.

18

TacitaRome, IT
#5

Building on what the reply above wrote rather than answering the original question.

I have been in this circle a year and this question comes round every few months. It is not a silly question. It is the question.

10

WilfStoke, UK
#6

Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.

9

SoniaValencia, ES
#7

I asked my nurse the same question and she said something I have repeated ever since: that the aim is to keep you on treatment, not to get you up the schedule.

9me too 8

LeifTrondheim, NO
#8

the reply above said something I want to sit with for a second.

Please do not read the comments under news articles about this. I lost a fortnight to that.

9

AnnikaStockholm, SE
#9

Building on what the reply above wrote rather than answering the original question.

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.

10

EsmeAix-en-Provence, FR
#10

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

4

Bryn MNeath, UK
#11

the reply above said something I want to sit with for a second.

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.

7

TarqWindsor, UK
#12

Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.

8

KikiFacilitatorGlasgow, UK
#13

I want to slow this down a little. There are four different answers flying about and they are all somebody's real experience, which makes them true and not necessarily relevant to the person who asked.

17

TobiasHamburg, DE
#14

Reading the reply above, I recognised more of that than I expected to.

Two things that helped me, neither of them clever: small amounts more often, and drinking a lot more than felt necessary.

6