Published on 12, July, 2020
Hi, I am not sure how to begin this post as I can be very poor at explaining things sometimes but I have often had poor experiences with extended family not understanding my needs.
With the exception of my parents and my aunt who have supported me, I have pretty much cut off contact with extended family due to abuse/emotional neglect. As per mentioned in a post (can't remember if I did mention before), I have had a family friend say that I did something in order to be abused and now often keep certain things about my mental health and autism to myself. In my culture (which is Carribean), I find that if you have autism or other disabilities as-well as mental health, people automatically think something is wrong with you and you are told to get over it or to be strong (due to the whole black people are strong stereotype), you are not allowed to be emotional as it is a form of weakness. I have also had family members disregard my boundaries like hugging me when I don't want to be touched or talking so much to the point where I am emotionally and physically exhausted as I have had to do years of masking (which I still do now at work as it is a survival tactic I have mastered over the years).
With my aunt who has supported me, she isn't autistic but suffers from clinical depression due to my cousin being murdered nearly 2 years ago; this cousin was another family member I was close to who accepted me as I was. At times, the same family friend I mentioned has said to me to get over him dying and for my aunt to do the same. I don't mention this to her because I know she would flip. She cannot do certain things sometimes and forgets stuff as she is grieving and my parents and I try to support her as much as we can especially as she is too depressed to work.
Due to these poor experiences, I feel ashamed of my skin color sometimes and wish I wasn't black; I don't know if other people have had other experiences like myself but yes I do feel that if family do not understand you it is better to cut them off than to let them in. It is also ironic how my family friend says to try to "reunite" with my extended family when they have treated me poorly, unfortunately my mum (who isn't autistic) has also had horrid experiences with her side of the family including sexual abuse. I think it is horrible to say these things as you are basically saying it is OK to be around abusers. I mean if I had children at some point in my life I would never bring them around people who abuse and anyone who thinks this is fine is sick in the head.
I am sorry, I just wanted to let it out somewhere.
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.
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 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 "
" ...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.
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.