I'm doing an autism passport. But I can't get my head round sharing with other people things that cause me distress. Obviously not all people can be trusted, so why give other people that information?? Am I wrong? Isn't it just enough to say that I get stressed easily? How have other people navigated this part of the form? Grateful for any advice.
You can have a look at the NAS template and information here:
I might not be the best person to describe it, as I'm struggling with it right now, but it's meant to be helpful. Its a form you can show it to health professionals, or perhaps the police to highlight your needs, and say what's helpful or unhelpful. I've only just learned about it and someone downloaded a form for me. I think it might be from the council. Apologies for not being more helpful, I'm learning and it doesnt say on the form where to download it from.
I'm slightly intrigued though. If not to ensure that you get the proper support from professionals etc, what would be the point of getting the passport?
My take on that would be if a professional was unfair and you then raised it to management or whatever and there's not much information on your passport, the professional has a very easy get out - "I didn't know". If it is in black and white on your passport and a professional is still unfair they have no excuse.
What causes me the most concern is change, uncertainty, new settings and people.
So basically any time I'd want a passport I'd already be in a situation I wanted to get out of. It would just need to say take me home and leave me alone.
I'd never heard of one before.
In my experience the things that distress me are part of a normal hospital environment, like having to sleep in a room with other people, bright overhead lights, being woken up by them at 6am, the food that makes me ill, no proper coffeee. Having staff argue or ignore my allergies.
Thanks for your reply Expecto_Patronum . However, I already have experience of a professional being extremely unfair. I think it's partly that experience which is making me so very wary. I think I'm going to put minimal information on that part of the form.
FWIW.....It took me about half a century, to be able to "isolate, distinguish and put-a-name-to" aka IDENTIFY my triggers. I now only share those "triggers" with people, when I feel a need to do so. You aren't wrong therefore (in my opinion) to be reticent to share your "weaknesses" on a form.....that will potentially be used against you in the future.
The world is moving (these days,) at a dizzying pace. Perhaps....protect your privacy and autonomy......rather than attaining a piece of paper and "digital record" unless you are WHOLLY confident that what you seek is a) accurate b) useful for/to you.
My advice is proffered SOLEY with your best interests in mind....and you can be sure of that....because there is no plausible ulterior motive for me to provide this advice to you.
I hope this is helpful to you, at this time.
I can see why you'd be wary but the passport really wouldn't be very helpful if it just said you got stressed easily. It doesn't give any information about what might make you feel that way. For example for me it might be someone touching me without a) asking or b) explaining what they are doing.
I have never gone down this route myself but my understanding is that the autism passport would be for situations such as with a medical professional or if stopped by the police etc so that they can fully support you with your needs. It is very unlikely that anybody in a professional capacity would use it against you and if they did you'd have huge grounds for complaint as it's in writing. It's not going to be seen by people that are just out and about that have no reason to care about your needs.
You may not now what stresses you at this time if you are recently diagnosed. It will take time.
Now you know you can pay attention to yourself.
I suppressed and ignored things for so long I didn't know. I also had got used to set routines and places so thought I was ok, but trying to do new things is exposing some of the issues.
Think about it as your "draft" or version 1.
As you learn more you can revise it and use version 2, and so forth.
I did one before my formal diagnosis and now I am revising mine since my assessment feedback.
There is the My Health Passport (which I use) on the National Autistic Society main website, some Health Trusts or Hospitals have one and some Integrated Health Boards might have a more general purpose one as a Neurodivergent Passport which doesn't include medical settings and history aspects in detail but just covers more sensory issues more likely to be encountered in a waiting room or consultation room.
Hi DormouseAtRest_25 , thank you for posting. I think part of the reason I'm struggling is that really I need educating somewhat myself. I've been so used to masking for years, then having difficulties or burnout and it wasn't recognised. It was only through a prolonged stay at a private hospital that someone noticed I had sensory issues, and then I got diagnosed as autistic. I am finding this form surprisingly hard work to do on my own.
The things which stress non-Autistic people are not necessarily the same as for Autistic people. Unfortunately, this means we sometimes need to educate people and spell it out for them to better understand us.
Our sensory sensitivities may not be obvious to others.
Our experience of social challenges can be the last thing which occurs to others.
Our difficulties with transitions such as moving between tasks or going into a new building could be a mystery to others.
Our need for a bit more time to think before replying to questions we had not expected can puzzle other people.
Other people may not know that our stressors can lead to our emotional dysregulation, perhaps shutdowns, even temporary non-speaking or meltdowns.
Oher people do not realise our repeated exposure to our triggers or stressors can contribute to our potentially experiencing Autistic burnout.
I think about this section of the passport as also being helpful for when "I am not having a good day, what do I need other people to know in order for them to better support me - until I am having a better day?"
Sorry Stuart333 , I've read my post again and can see that I got progressively more stressed as I wrote it. (Lol!)
I think I'm going to have to focus more on what I do want, and then explain that diverging from that can be stressful.
Thanks so much for helping to put it in perspective.
You want the other people to avoid the things that cause you distress, right?
You need to give them something to go on, they won't have telepathy.
You don't need to be super specific, but you need to give them a hint or top level idea.
Just saying you get stressed does not tell them what not to do. If you want them to speak quietly, only ask one question and wait for an answer, stick to yes no questions, or you're scared of hospitals or dogs, etc. you need to say. I think this is what it means.
