Speaking on the phone, medical & health appointment

I hope your appointment went well and you got everything said that you needed to.

I find talking to doctors and the dreaded receptionist *shudders* stressful and awkward. I struggle to talk to my family let alone strangers on the other end of the phone! It's infuriating dealing with them lol. You can say things but they don't take it all in so it gets frustrating for me.

Definitely straight away explain yourself what you're like and that you struggle. Make that heard loud and clear. Hopefully they were ok with you. I've had some who got funny.

They're hard work lol but if you can get some understanding straight away it should make the whole process a lot easier for you.

I found surgery where I can book appointment online. I was there once so far to see my GP and I didn't have to speak to anybody except GP when I got there, It was to get referal for cancard. GP let me rant a bit just nodding when he was writing down referal

Mental Health Support? What's that? Counselling? I fixate over bad memories enough to do it again when asked. Worst is when they think it will make you better if you make future plans, e.g. I'll have a job in 6 months. How's that supposed to work? 6 months later I still had no job despite trying, and only felt like a bigger failure agaion,

I had enough dealing with MH after over 4 years battle to get fiagnosed. They managed to remove me from list at some point, while I was waiting unawares.

Does that work for you? I tried that a few years ago when trying to access mental health support and was told that I simply wouldn't get any of I couldn't use a phone.

I'm glad it's easy to read but I wasn't sure if this post was spam.

Yes the firing of questions can be difficult.  The appointment I had referring to the OP above was good as she had a structure she was going through which helped.

I really like the type of post that is simple so that everyone can understand and everyone can understand the message that the author wants to convey. Your style is unique but it is easy to understand what you want to say in this discussion. [removed by mod]

I find this difficult especially if it's with someone I don't know. I would prefer it if there was a text or email way of communicating instead. It's not easy talking anyway but when they fire questions at you, sometimes personal ones it can be hard to try and explain. Leaves me feeling anxious and stressed out.

The appointment for the above went ok, it was talking more about physical aspects.

I thought I had an appointment today with the mental health team. I had my notes ready. I've had difficulties with this service before,  apart from one excellent therapist, I usually end up getting fobbed off, not being listened to correctly and generally feel worse off. It's given me anxiety all today as I feel I won't get my point across effectively. A lot of the time I don't feel right but fail to understand why. I feel like unless I can give specific reasons, they're not going to be able to help me.

What makes it harder are those blooming stupid questionnaires they use to measure progress over the last 2 weeks. I find it difficult to answer as a lot of the time my head is crammed full but I can't identify everything as "worry". And 2 weeks is a long time, I don't know how to filter through that fortnight...it's like how long is a piece of string?! I find it hard to remember although do keep a log. Unless I'm having difficulty on the day they ring, I have trouble explaining cos I can't cast my mind to the "bad" days. And also it's not the frequency of poor mental health, it's the impact when they do occur. So I might be ok for 2 weeks then a few days later things get challenging  again.

The appointment is actually next week and i got mixed up. I've waited 9 months for any meaningful input from this service and still don't feel confident. Im currently off work so things arent as difficult as they were when i first requested help but i know when i go bsck itll start up again. I feel unless I've got specific problems now, they won't be able to help. I'm just guessing as I don't know till next week but previous experience doesn't fill me with hope. Services are stretched and I feel I'm taking away from someone who needs more help who has more complex needs.

We need more autistic people working in mental health. There needs to be more emphasis on acceptance instead of being a broken problem to be fixed.

I agree with this. I don’t feel there is enough understanding about how autism impacts on people’s ability to access health services. The life expectancy for people with autism is much lower - maybe this is partly why - because they are unable to access health services due to anxiety issues. When I was in hospital last year it my autistic traits made that experience so much more traumatic. The lights, the sounds, the sensory impact of treatment, the anxiety of being surrounded by people and interacting with people. Just horrendous and I’m still suffering PTSD symptoms as a result of my stay in hospital.

You are right

Get that. I find other stuff hard but cope with no special concession, but the GP I seriously need a hand with or can't have any health care. For others of our Specteum siblings it's education or their social quality of life, or their transport...it's not making a fuss. It's you the valitant warrior, who has battled through so much on NT terms wanting that little lift on your terms for that one thing that's hard for you. It really is so very little to ask of society.

Oh great. There's nothing better thAn a partner for this role. They can do so much more than a professional advocate because a) they are readily on hand b) know you better than any one on the planet x

Yes but also part of me doesn't want to make a fuss or think I'm deserving of any "special" treatment. I've got this far in life without it. Having said that,  there are an awful lot of autistic people out there,  even more undiagnosed,  and many more who will come through as more awareness is raised. But it's like with supermarkets how they have "autism hour" (at 9am on a Saturday when no one goes at that time anyway...why not have it at 3pm on a saturday when its most needed!?...). Why not just make it like that all the time for everyone. I'm sure there are many allistic people who don't want music or bright lights blaring all the time.

Why do you feel guilty about it? I dont know your reasons for being veggie, but you are probably doing more and are more conscious of things than a lot of other people. I heard someone say on Gardeners World once in relation to encouraging wildlife that "anything is better than nothing, however small" and I think this is a good thing to apply to other areas not just gardening.

I think we are meant to eat meat just not the amount of farmed meat that we do in this modern age but it's how we have evolved due to inventing farming methods. I was watching Ancient Britain on iplayer...it seemed ancient people who were hunter gatherers had an intrinsic relationship with nature and were part of it. I think people were thankful to the animal for providing for them and nothing would be wasted. 

Have a Guinness and lots of leafy green veg!

Also you said we struggle with things which other people find easy. I think this could also be applied in reverse but can't think of any exsmples.

Sent u a pm

Yes - just as you say - ‘a need for certainty’. I have such a huge problem in that way. I worry and worry and worry about the uncertainties - and I end up with no peace of mind. I’ve had a terrible few months with this being particularly bad recently. You talk about ‘worrying if the interaction went well’ - I do this a lot. 
I know it’s good to be positive about autism but sometimes I get so exhausted with all the problems it brings with it. The most ordinary things feel almost impossible for me sometimes, and there’s so little help.

Thank you for your kind and supportive words - I massively appreciate it. It’s so easy to just feel terrible about yourself when you struggle so much with things that other people seem to cope with so easily. It’s done me so much good to come on here and realise I’m not alone.

By the way I’m vegetarian too - and I got very low on iron. I was very ill last year so am temporarily eating some meat as my iron levels got so low and I couldn’t tolerate the iron pills the doctor gave me. I don’t like eating meat though so will stop eating meat when my health is better. The only meat I can face eating is bacon - but I feel so guilty about it. 

Yes my partner is very understanding too. He intuitively picks up my slack in social situations. I think what you say relates to a need for certainty....we need to know we have been understood correctly or that the interaction went well.  I would say don't be hard on yourself,  saying about handling things uselessly or being a failure. That's not being fair or kind to yourself.  I think you are probably doing your absolute best in the moment. There's a lot to process. There's a lot going on behind the scenes when we are interacting with others.

It's little things like, on two separate appointments, the doctor asked me if my eating was ok / how my diet was. I didn't think to mention that I'd become vegetarian, because to me that's healthy eating and its not like any foods were making me sick etc. So yes i was eating ok and my diet was good. If they'd asked if I had recently changed my diet or were there any foods I didn't eat that'd be more specific and I wouldn't have to second guess. It took till about the third appointment before I realised I should probably mention it. I had low iron and b12 which can happen when you don't eat meat.

I really relate to that! My mind just races when I’m on a phone call like that - and then afterwards I just feel it’s been like a runaway train that I lost control of! I find it hard to focus in the moment, forget most of the things I meant to say etc, and then up feeling regretful afterwards that I handled it so uselessly. And then I go over and over in my mind about it, feel like a failure and then end up needing loads of reassurance from my husband. He’s so patient with the fact that I need to repeatedly ask for reassurance after things like this, I feel really guilty about the amount of times I have to ask for reassurance from him. He’s incredibly patient about that and I feel I’m very very lucky to have him, and that he is so understanding. 

Thays great youve been able to get such help. I think my partner informally takes this role and is happy to accompany me when he can. I'm very grateful for him.

Yep! Luck Beardon argues for specific autism health care in his book about avoiding anxiety in in autistic adults. I'd love to see a special 'autism' GP with a little autism ward attached to every hospital.

Somewhere where you can e-mail an appointment rather than battle through the receptionist, with sensory friendly waiting rooms and longer appointment times with GPs who get that it's difficult to explain the problem and some permanent advocate on hand to liaise with the hospital to make referrals as easy as possible on us. It would go along way, huh.

The other thing to try is try an get an advocate. Social services might not take it on themselves if you don't have other needs but might be able refer you to other agencies.

I had one. She was able to meet me before had, take notes of what I needed to explain to the GP, took notes in case my brain shut down in their an I missed anything and arranged the appointment for me, explaining to the GP how my autism effects me in those situations before hand. It helped. 

Sadly there doesn't seem to be a permanent service for this. It took days of my time, over months, on the phone to organise and that won't help if I'm knocked over by a bus or contract COVID tomorrow and therefore need a GP.