Shutdown/unable to speak/pressured by mum

Hello k7Q and welcome to our community here.

Your post helps us to better understand what a difficult situation with which you are trying so hard to manage (as best you feel comfortable to do so given the options available to you at the moment).  

Setting aside consideration about your mum for a moment; do you have someone in the real World, or online, with whom you do enjoy communicating / corresponding - by any means which duit you (please notice; that I am not putting the emphasis on talk / speak)?

My priority is that I am keen to understand: what you would like communication styles and methods to be like (keeping what your mum says she wants you to do in a separate lidded box for now).

It sounds like; over the years, you have worked so very hard attending numerous therapists etc.  Were there any techniques / strategies / way of thinking about things which appealed to you over that time - perhaps something you would like to explore in more detail if you had the opportunity?

In our family we have a relative who was fully non-speaking until they were around aged 7.  In more recent years; they have e.g. happily spoken to me (a relative they see very infrequently) at family gatherings about e.g. their latest interests.  Despite these facts, not their mum, but their grandma: keeps on making reference to the young person not speaking and also - all at once / every time I meet her - sort of reminding everyone and pseudo apologising about the situation with her grandchild ...which is not actually the case and nobody but hew actually considers to be an issue.  I find that grandma's behaviour disrespectful to the young person.  It is the young person's comfort to communicate with whomever and in whichever manner they are most happy and relaxed - which is of my interest.  They are a great young person - when I hear the young person's name mentioned - I think about what I know of their interests, their enthusiasm in sharing those things with me and how pleasant and enjoyable it is if they attend a family event (not details of their distant past and certainly: I would far prefer communication opportunities with that young person ...and actively avoid likewise with their grandma!).

Hello DormouseAtRest_25 and thanks for the kind reply.

DormouseAtRest_25 said:

Setting aside consideration about your mum for a moment; do you have someone in the real World, or online, with whom you do enjoy communicating / corresponding - by any means which duit you (please notice; that I am not putting the emphasis on talk / speak)?

I am sometimes able to enjoy talking with my younger sister; apart from this I do not enjoy communicating.

DormouseAtRest_25 said:

I am keen to understand: what you would like communication styles and methods to be like (keeping what your mum says she wants you to do in a separate lidded box for now).

I would like to be able to sign. I like to ‘absorb’’ communication such as watching tv. I do not feel like there is any need to respond to others apart from the minimum nodding or smiling. I often respond in my head and do not talk because I imagine that by ‘rehearsing’ in my head what I want to say I am encouraging masking. Or the other person does not allow for my processing speed and does not stop talking. At university I actually took drama at first. As a child I hated performing. The other side to performing though is that thanks to masking I am skilled at copying others. A part of me would enjoy taking part in acting again but I am scared that this would encourage masking which has had detrimental effects on my health.

DormouseAtRest_25 said:

Were there any techniques / strategies / way of thinking about things which appealed to you over that time - perhaps something you would like to explore in more detail if you had the opportunity?

The best therapist I had allowed me to write down a list of thoughts during the week; I would present this to her at the start of the session and she would then say what stood out to her about the list as a starting point. Since receiving the diagnosis I was presented with a useful list of suggested therapy adaptations which I will push for if I am ever offered further therapy. At the moment I have been waiting for NHS therapy since 31/07/2024. 

DormouseAtRest_25 said:

nobody but hew actually considers to be an issue.  I find that grandma's behaviour disrespectful to the young person.  It is the young person's comfort to communicate with whomever and in whichever manner they are most happy and relaxed

Similarly my mum is the only one making this an issue. My dad and sister do not talk a lot either, although they are not non-speaking the same way that I am at times. When I am relaxed it is easier to speak.

Iwas thinking about something I was shown: a bullet journal.

Some people use them to aid their organisation, however, I wondered if you might find it a useful resource style to help you think about things important to you, what you want to dhare / with whom / via which method / at which opportunity.

https://www.goodhousekeeping.com/uk/news/a564696/how-to-start-a-bullet-journal/

I operate a simplified version of this (substitute organisation with communication) using a small (A6 pocket-sized) notebook.  I set out a few pages per person / group / healthcare professional I plan to meet in person / meet via Zoom / MS Teams / Google Meet.  As I think of things Zi want to share with, or ask them - I jot down a bullet point.  When I next meet them; it gives me somewhere to note in context the key information they share with me.  The notebook approach doesn't seem to offend anyone and means I can "park" things instead of try and hold everything in my thoughts.

If there sre more complex things (e.g. links to a website / podcast / music / video, or a table of data, a photograph or other image, or a bsg packing list reminder of items I want to take with me to show someone) - I use a draft email (to myself) per person I plan to see, or an event I intend to visit.

These two techniques mean if I am tired, or sensory struggling with the e.g. café environments; or there is a communication barrier - I can still show the person my list - which is obviously personalised to them / thr event.

This proved helpful at an exhibition; where the din of everyone's hubbub within the hall made communication with exhibitors very difficult - until I showed them my list of enquiries and they were able to annotate, in situ, their replies.

(Just a thought).

Iwas thinking about something I was shown: a bullet journal.

Some people use them to aid their organisation, however, I wondered if you might find it a useful resource style to help you think about things important to you, what you want to dhare / with whom / via which method / at which opportunity.

https://www.goodhousekeeping.com/uk/news/a564696/how-to-start-a-bullet-journal/

I operate a simplified version of this (substitute organisation with communication) using a small (A6 pocket-sized) notebook.  I set out a few pages per person / group / healthcare professional I plan to meet in person / meet via Zoom / MS Teams / Google Meet.  As I think of things Zi want to share with, or ask them - I jot down a bullet point.  When I next meet them; it gives me somewhere to note in context the key information they share with me.  The notebook approach doesn't seem to offend anyone and means I can "park" things instead of try and hold everything in my thoughts.

If there sre more complex things (e.g. links to a website / podcast / music / video, or a table of data, a photograph or other image, or a bsg packing list reminder of items I want to take with me to show someone) - I use a draft email (to myself) per person I plan to see, or an event I intend to visit.

These two techniques mean if I am tired, or sensory struggling with the e.g. café environments; or there is a communication barrier - I can still show the person my list - which is obviously personalised to them / thr event.

This proved helpful at an exhibition; where the din of everyone's hubbub within the hall made communication with exhibitors very difficult - until I showed them my list of enquiries and they were able to annotate, in situ, their replies.

(Just a thought).

Spreadsheets are especially helpful to lay out options (such as product comparisons). I also keep an emotion diary using a sensation and behaviour wheel, plan any outings, track fluid intake and use energy accounting.   

I am lucky to not have any allergies - definitely means ordering is straightforward if slightly awkward. The coffee shop black sheep have screens in store eliminating the use for speech apart from a thank you when collecting the order. 

In general I do not require a lot of healthcare appointments. The health passport was a recommendation from my diagnostic report therefore I recently created one - I have yet to use it but did read that there is no evidence that they actually produce desired outcomes. This does not mean that they are not effective, just that evidence to support their effectiveness is not yet available through formal research. 

I imagine that outcomes are dependent on a lot of factors such as the clinician’s experience and training.

Still seems like a step forward!

Spreadsheets are good (personal library / music catalogue, study plans, learning vocabulary for a new language, household and savings budgeting, packing lists for trips, planning the shop / batch cooking / freeze ahead menus in preparation for the Christmas Season Holidays - are some of my favourites).

I have noticed the trend that some café etc. no longer put their menu online on their website - but sometimes may do so on their Facebook instead.  I have a food allergy - so I also like to know my options in advance.  If I cannot find a venue 's menu - I email them (as per the UK Food Standard Agency guidance - England, Wales and Northern Ireland) as allergen information legislation means they are supposed to record and nahe available that information and local authorities enforce allergen information.

For some very noisy café / restaurant till areas which I enjoy visiting - say once a month; I have a small number of study reference / index cards pre-written out (plus, I include my allergen to avoid, a thank you and a smiley cartoon face!).  This means, particularly if I have got too tired / hungry / thirsty; I can hand over my order and not have to try and compete with the racket around the till area.  Also, I don't have to disclose my business to half the café!

Thinking of your physical assessment: I groan in my head if a surprise set of questions / forms appear unexpectedly.  I keep reminding healthcare settings etc. that I can engage with the appointment more productively if they email me the questions / forms in advance - so I can digest their content and intent ready for the appointment.

Something other things which I keep in my "ICE" (In Case Of Emergency) folder on my smartphone - ready for in person medical appointments: a outline human body map - so I can show the clinician on the diagram (whatever) rather than pointing to where on myself (less intuitive when stressed), a pain scale (with faces, number ratings and phrase descriptions), plus, a frustration scale - for similar communication troubleshooting reasons.  Also, if I have experienced an allergic reaction to medication or food - my articulation csn become physically limited.

I also make use of two "passports"; one just about neurodivergent / Autism reasonable adjustments, and the other is the National Autistic Society"My Health Passport" - which is more detailed and includes mefical information.  This enables me to email the clinician team ahead of the appointment and let them know I may make reference to the passport during the appointment.

Use of such passports isn't always perfection - sometimes an excellent outcome, other times disappointing and frustrating (however, in the latter case; it can at least lend extra heft to a follow up service improvement request / complaint ...should the need arise).

https://www.autism.org.uk/advice-and-guidance/topics/physical-health/my-health-passport

Ever onwards!

I use something a bit like a bullet journal to aid daily organisation: pen and paper to simplify things.

I may try this for communication. I enjoy using spreadsheets for things and one of these is for my coffee shop orders. I add the rating from maps/any findings about the environment (loud etc.)/what I am planning to order. When I arrive at the shop I know exactly what to order removing the unplanned element of communication. This does exclude some shops whose menus are not available online; although this ensures a safe and familiar circuit of reliable shops. 

I attended an appointment yesterday and was asked a lot of questions which I was unprepared for. In future I will ask in advance if they can simply give time when waiting for the answers. It will not always be possible to plan answers in advance; yesterday was a physical assessment therefore questions were related to a physical exam. This is about me realising though that I am able to ask for adjustments and use my style of communication.