Do you ever feel like extended family are ignorant towards your needs?

I keep a Sunflower Lanyard in my coat pocket (so it is easy to hand if I want to use it e.g. if I find I am feeling rather low on my personal reserves and wish people to hopefully co-operate a bit more thoughtully for my benefit).  I don't tend to wear it all the time.  I also like the idea that; if for some reason I have shutdown I would have the option of handing it to someone trying to be helpful - to give them a clue something is an issue for me.

I know lots of Counties make use of an Autism Alert credit card sized notice - to keep in your wallet / purse etc.  In our County there are separate ones available - one design suitable for children, and another designed for use by adults.  In our County both the Chlid / Adult cards are free - and I don't think you need proof of diagnosis.

(Our region's Police Service have a similar one available to people too.  This Police card "

this card enables you to input useful personal information (such as how to communicate with you or important additional diagnoses or dislikes) which will be held on the (name of our regional Police Service) Database, which can be accessed by police and emergency services should you require support from them in the future.  You will need to send proof of diagnosis in order to apply for this card.  It is free.

" ...however, as they mention: you will need to send with the application proof of diagnosis.  I personally view this step as an unhelpful barrier to many Adults, where many may experience long waiting lists for formal diagnosis.  In particular I view this as a particular issue for Women - who, due to the nature of assessments used or the level of experience of assessors dealing with women and girls ...are at increased risk of compleing assessment without successfully being diagnosed.  It is a real missed opportunity to better support Women if they were to potentially find themselves in a more potentially vulnerable situation than they might have anticipated - for whatever reason.  I also think the "important additional diagnoses" aspect is important - whether that is another layer, additional to Autism, of being neurodivergent, or perhaps a key medical consideration such as epilepsy / diabetes / allergy). 

I have also trialled using a completed copy of the NAS (Autism) - My Health Passport to ease having to explain myself in Healthcare settings.  (I don't see this Passport as "Do it and forget it" as I expect each time I use it - that I might reflect on the experience and refine / extend that version of my Passport with those learning points in mind). 

So far, I have found some Clinicians respond really well to you on seeing the Passport (and engage further with you demonstrating considerable interest) ...while others (even in the same Team) can still just look at you with a particularly strange ulta-fixed-blank-dismissive expression, waft it around a bit without looking at it - let alone have a quick read through it, or just put it down somewhere in the room unrelated to your Patient notes ...and basically pretend (despite additional prompt from either yourself if you have attended solo, or your Advocate if you were able to be accompanied by someone!) just completely ignore what you have just signposted for their attention.  What I am saying is: it is worth persevering - because that is how you gie the good Clinicians the opportunity to engage fully with you ...but it is a good idea to manage your own expectations that you might not always get a positive reaction from some other Clinicians.  We should take confidence from the knowledge that there are Acts of Parliament on our side - so when I experience such a poor Clinician's response - I make extra effort - for the benefit of all - to provide assertive, constructive, feedback via e.g. as a minimm: the Hospital PALS (Patient Advice and Liaison Service - most Hospitals seem to have a similar Team, plus some Hospitals also have a Learning Disibility Liason Team (or called something similar) who might be helpful in such a situation.

It seems to particularly be designed for use at Hospital appointments (however, I find GP Practice appointments are just as challenging to navigate - so I plan to think a bit more about this too).

The below web page includes the PDF (which you can edit on a computer and then print it - you don't have to print it and write on it by hand if you don't want to do that).  On the same page is a guidebook to give you ideas on what to think about before you complete the different sections of the Passport:

https://www.autism.org.uk/advice-and-guidance/topics/physical-health/my-health-passport#:~:text='My%20Health%20Passport'%20is%20a,nurses%20and%20other%20healthcare%20professionals.

That's great! It can be complicated; I used to have friends who were autistic too so it was fairly easy but with those who weren't, explaining what I need from them was a bit harder. I hope you feel you're getting what you need from this place. 

Thanks. :-) Luckily I'm very close and friends with everyone I work with (especially my boss) so it's been made clear to me that where I work is a safe place to talk about my experiences with being autistic. Not too bothered by my extended family not knowing as I never see them. Close friends is just a fact I've never really brought it up, but I feel deep down they 100% know because of my traits haha. This forum is mainly just my space to talk with people about experiences, which is good to have. :-)

Since I was 20, I've been a bit more willing to tell people about it. I wear my sunflower lanyard out and about, that kind of thing.

I hate speaking up at the best of times, because I feel like I'm being difficult. Getting over that is complicated.

I'm sorry you have to deal with that. I feel it would definitely benefit you to have people that you can talk about it, but I appreciate that it's not that straightforward.

My immediate family agreed that we won't tell my extended family at all because the way that they are and would likely not be very accepting or understanding of it. Only a few people in my circle know, only family and my work. Not even my close friends know, and if they do, it never gets talked about.

lina-chan said:

. I have also had family members disregard my boundaries like hugging me when I don't want to be touched

(Although I am not of your ethnic and cultural heritage, I did live and attend school for 2 1/2 years in the Caribbean - where it was usual for my school friends to be local to the island rather than to be from ex-pat European / North American backgrounds - so, I hope you would not be offended when I say that I have been a first-hand observer of some of the attitudes you described so well).

As I read your post it brought to mind one of my school friends in the Caribbean who really used to experience such matters within her family - so difficult to do or say exactly the ideal thing to best show her support. 

That said, she used her intellect to her advantage and achieved for herself a successful lifestyle (worthy of who she was and not the version of who the troublesome relatives tried to bully her into submission).  All credit to my friend - what a role model!

Back in the UK, I too have experienced an aspect of this within my married family...at a Funeral just following a Lockdown where, (for my own health reasons and due to my supporting an elderly person who needed to shield), I was still wearing a mask and keeping my physical distance).  Everyone in attendance knew all of that information.

In both sides of my family I have ensured it is also common  knowledge (before  Covid-19) that I wish it to be respected that I am not a social touch person.

At the Funeral, this particular relative (with no mask) marched straight up to me, almost knocking me off-balance as they then grasped me by both shoulders and shoved their face into my masked cheek as they proceeded to whisper an unprovoked abusive comment in my ear - which I will not even dignify with a summary - ...secure in the knowledge that nobody else would overhear their narcissistic vitriol.  The whole episode was bizarre.  And yes, of course, I was vexed as our next step was to walk into the Church for the Service.

That shocked me, as I would not have expected that behaviour of that individual.  We had always been on cordial terms before.

This person was confident in their (correctly judged, creepy calculation) that I realistically would not be afforded any opportunity to remonstrate. 

Not least, as at that event I was - by convention / custom / protocol - attending as the senior family female host / figurehead (as I was there to support and troubleshoot or represent the best wellbeing interests of my Husband ...as we were burying my Mother in Law. 

You have to wonder: quite what sort of base personally stoops to such a stunt in the circumstance?  They committed a terrible mistake and in doing so; they exposed their true composition.

I suspect therein lies a potential clue to such a reprehensible performance by that relative.  They had (for reasons which shall remain confidential) grown accustomed, over the years, to being the centre of family attention.  But not so - that particular day.  I do not really think it actually had anything to do with me.  I was just inhabiting the role of their ire.

I knew (from how and what they whispered) they were not emotional, inebriated nor oblivious to the potential impact of their words / action and it's wished for detrimental outcome s.  They.had decided to meter out that abuse for their own benefit.

What somehow made it all the more personally disappointing ...it was one woman to another. 

Additionally, the perpetrator was a woman to whom I had often extended a range of considerable support to her household over circa 30 years.  Seriously?  It is staggering what appears to motivate some people.  What a life lesson!

What put it all truly beyond the pale ... they were aware they could also be putting in harm's way my vulnerable, elderly, shielding charge too.  That needed to end right at that moment.

That was a non-negotiable redline - which had the side effect of invoking my "truth, justice, fairness, equity" circuit of combined logic, indignation, clarity of mind and newly focused determination ...which (definitely their miscalculation) completely overrode how they had intended me to react and suffer.

I decided (on the spot): that I absolutely refused to give that person the power to feed off that situation 

My determination was: that I should only envisage that person crawling back under some rock - somewhere (not interested "where"). 

Yeah, I have kept things to myself for years around certain people then when I am told to let it out I get judged. I even had the same family friend (who I work with) tell me that I need to look beyond my disability in relation to life which comes off as ignorant IMO.

Autistic people can have a fulfilling life but do require support depending on needs/experiences. If you ask for support too it can be seen as an issue, especially at work. Thankfully in my current job I have some accommodations and access to a mental health service which is good but not everyone has that sadly.

I'm from an Asian background and it has been difficult to get my immediate family to really understand my needs. It's not through lack of trying. There's been a lot of "just think differently" and generally a lot of expecting me to act like a neurotypical person.

I'm sorry that's been your experience. I get the feeling of wanting to keep things to yourself too because speaking up about it doesn't help.