Autistic confused and worried. Sorry for long post but my austism doesn't help me decide whats not important lol.

[Shashf]

Hey all i feeling very overwhelmed at times. I seem to be able to acces treatment which i more tgan satisfied with then my confidence is knock because of an horrible situation I'm put in. I'm in an constant battle with my own mind as i feel I'm unfairly treated at times. I was in A&E where it was discovered i had complete shadow on left lung and oxgyen was low i got discharged after they deemed me to be at satisfactory oxgyen levels with antibiotics co-amoxiclav 500mg/125 i improved after 2 days of finishing i did some light cleaning then later that day ny stomach was quite painful, anyway i later was taken A&E anyway had to see Surgical team they sent me home with more antibiotics suspected UTI to be fair can't fault treatment they couldn't find another explanation for blood in urine ect, but I was to return if got worst and GP needed to chase up urine culture, unfortunately i felt i was getting worst and u was wheezy and cough up phelm ect, but the treatment this time was completely different i was told i needed to see pysch doctor not physical health as all in my head and more, i felt worthless and i had completely wasted their time she made me do an urine sample to then say no need to test that as my lab one already negative, I replied sorry and as she implied it was viral not bacterial i said just like yourselves I'm not to now I just follow the advice. I don't really want to have to go to doctors or A&E again but i received an phone to provide another urine sample as Its inconclusive. The difference in care is unbelievable don't get me wrong had she said its actually viral not bacterial then i would of jump for joy but she just judge me before meeting me. I know my communication difficulties makes it harder for them but what can i do if they don't allow me to have my partner with me, Obviously i know no-one can take my fear away, I wish others wasn't suffering like myself but what i take away from that its no personal. I hope you all are keeping safe just wish to get infections and asthma sorted to go an kick football get rid of so much stress 😀.

[skischool]

Please do no apologise for your very warranted post,you have obviously been treated harshly and without empathy and consideration for your autism.

Please persevere with your treatment for your probable infection and demand that your partner attend for both your reassurance and well being,i am sure that this will be agreed to,perhaps enlist the aid of your GP or the clinic treating your autism to make sure it happens.

Best wishes Ski's and Scruff's

[judes]

Never apologise you appear to have horrendous treatment, which is not good enough.

Hospitals seem to be like a fortress these days, if you have communication difficulties you can take your partner with you.

Best wishes

J

[Hidden]

I’m a dad to a young teen with high functioning ASD. Even with covid, you do still have the right to be accompanied because of your ASD: they state that you should attend by yourself only if you can. If you can’t, then one other person can attend with you, and if they refuse to let someone go with you, it’s now been confirmed that they are actually breaking the law (the Equality Act, and potentially breaching your human rights), as they’re depriving you of the ability to access safe medical care. I had to take my daughter for an unfamiliar appointment last week and they told me I couldn’t go in whilst they did some tests, purely due to covid risks: they weren’t aware she’s on the spectrum, so I told them and they immediately let me go in as a result. It may not be relevant to you, but I always avoid using the term Asperger’s (which is her official diagnosis), because a lot of people - including medics! - don’t see this as anything more than being a bit ‘quirky’. They don’t understand that it actually causes real difficulties, and that it’s also a spectrum in its own right, with some people having more areas where they struggle than others.

If you need to go to A&E again, or any hospital or medical appointment, just say something like ‘I have autism/am on the autistic spectrum and I have to have someone with me’. You shouldn’t have to justify it any more than that, and you shouldn’t be told no if you explain that you have an additional need, because the covid rules DO allow people with autism to be accompanied to all medical appointments, and both the government and NHS England have put that in writing. If it’s a preplanned appointment, you could also always ring the department/clinic ahead of time and make them aware that you’ll be bringing a companion and why: that takes some of the pressure off on the day because you can just tell them you phoned ahead. If the person you speak to is forward thinking, they should make a note of it for staff on the day, or you could say that to them: please can you make the clinic aware I need a companion.

[Ergendl in reply to Hidden]

Thank you for this. I too am on the spectrum, so it's good to know I can insist on my husband coming with me where necessary.

[2greys in reply to Hidden]

Very clearly presented. It should be a right for all patients to have support if they require it. Personally I find it easier to be on my own, not having to deal with my partners emotions, that can distract me from asking important questions. ASD has so many different facets that it is unfair and wrong to lump them all together, as wrong as lumping Chronic Bronchitis and Emphysema together as COPD. It is perfectly obvious to me that Shashf is being overwhelmed with anxiety caused by the medical problems being compounded by the attitudes of the medical staff who really ought to know better.

People are really so weird with their attitudes, they are so full of praise and admiration for Albert Einstein, yet he was gifted with Asperger’s.

[Shashf in reply to 2greys]

To be honest I'm the same i can cope if they are reasonable and at least try to understand if it is all in my head which clearly isn't due to test results ( maybe i don't quite say things how they expect them to be said) then they are possibly just make it worst. I feel sometimes they speak to myself in such manner as they feel approaching me in same manner as others wouldn't be appropriate. As for flaming Elbert Einstein yes he may of been exceptionally talented ect but I feel he lack in areas where we Aspergers are sightly higher at but due to his exceptional brain the other areas wasn't required as much. Especially as if I'm to talk about sports I'm like an completely different person lol 😆

[Bkin]

Hi Shashf sorry you are going through this, if it helps any both lung shadow and UTI can clear up after the meds, but if you are still getting symptoms you should keep returning to your doctor telephone appointment to explain.

Best wishes

[Shashf]

Hey thanks everyone unfortunately I've had this sort of treatment for an while seems an regular accordance in my area with mental health, communication difficulties infact anyone lol its not really new only i can't have partner even though I say I'm on the spectrum. Unfortunately think alot if my treatment is down to lack of training ect as I say some visits can be the best you can ask for and honestly make you feel like they understand and if not willing too try, others are dismissive, blatantly rude ect i get scared as i know I can become aggressive or meltdown I never have expect once in an hospital but that person was dismissed due to what the incident involved. I feel sometimes I'm crazy and question did it really happen 😕 only earlier i had an asthma reveiw feel my opinions was disregarded as i expressed concern that the pink inhaler hadn't help with my symptoms of cold hands and feet that turn blue along with lips and maybe was due to chest infection rather than asthma as infection was diagnosed couple weeks later and my peak flow is within normal for me abd I still have slight symptoms, instead nurse said continue with pink inhaler and we will reveiw 6 months, I just felt whats the point of reviewing with me causing anxiety to make sure i answer phone ect as she disregard me completely. Sometimes I feel I shouldn't take comments the way I do and I try not too other times I not able to answer their questions like what do I hope to achieve, other times completely unwarranted. I've had an few times safe guarding issues opened up by other staff members but this hasn't really changed anything. I don't expect 5 star treatment just constancy. Maybe my GPS think I expect to much but I try to be to the point and ask is there alternative treatment to just antibiotics as I've had over 200 prescription with IV aswell in 3 years obviously not productively but they sat my yes don't reach out or take the treatment offered. I don't know maybe it is me but I seem to take 2 steps forward then 4 back.

[Ergendl in reply to Shashf]

Sometimes people can label you in hospital, and the label sticks, even if it isn't true, which is why I've had some horrendous miscarriages of treatment in the past. Do take someone with you to help you with the questions and explanations. Don't let them fob you off.

It may help you just to write down the facts, and then order them into groups. That way you may be able to identify the heart of the problems rather than it all looking like a big black cloud. It's also a good idea to write down any questions you want answered, so that you can insist on the people treating you to answer them to your satisfaction. After all, as patients, we are the clients, and the medical staff would have no jobs if they had no patients to treat.

Virtual ((((hugs)))), my fellow Autist.

[Shashf in reply to Ergendl]

Thanks yes I write them down ect I think because I'm still unwell it got me quicker than it should

[Shashf in reply to Shashf]

I think its lack of training thinking they have to avoid normal conversion context anyway virtual hugs right back to you.

[Alberta56]

Ergendl is quite right, and Charlie. I have been allowed to accompany my adult autistic daughter to medical appointments no questions asked. in fact I think they quite liked having me there to help explain things when daughter got in a muddle. It also helped stop her getting stressed out.

Can you find a professional to help you? Local Autistic Society, Mind , or Mencap.( I know we don't have learning diffs, but both these bodies, in my area at least, seem more on the ball about the stresses endured by autistic people than some people who ought to know but don't.) Also there are ladies called Community Champions in my area. You need someone to LISTEN to you and help you sort out the facts.

You are not worthless or over demanding. You are not going mad, in spite of 'their' best efforts. Best of luck. I hope you can soon get out of this horrible patch and feel as good about yourself as you deserve to. Alberta xxx

[Shashf in reply to Alberta56]

I can't access support as none is available but social services did do an assessment and deem i needed support they are trying to put things in place unfortunately they are struggling due to covid inpatient mental health facilities for 8.5 came out in community with 32 pysch meds alone so I think even though my autism showed it wasn't so evident due to the power of the meds and i only require ADHD medication now so obviously before i couldn't communicate due to tiredness that was acceptable. I think sometimes helping me realise its not just me and having an way to express myself without judgement is all I need lol thanks to this group I have had that chance.

[Response]

Glad to hear from others that you have the legal (and moral) right to have someone accompany you.

Sorry that you have had inconsiderate and even bad responses. The issue is NOT you - so NEVER feel bad about being concerned about your health. Sometimes people have no understanding of what others are going through, sometimes they are very tired or have personal issues, and sometimes they have become hard due to the nature of their work in order to work day after day where they see a lot of suffering.

I hope the issue is sorted soon.

Helen

[Shashf in reply to Response]

I totally get they no doubtably are stress abd extremely tired I wouldn't wish an days work they do on anyone thats why i try seeking help from Gp or pharmacist first. Their job is unrealistic extremely demanded and is only getting worst I think its hard especially when the spectrum varies also does the difficulties i may face. I think sometimes it gets to me as all they had to do is approach like they anyone else if I'm unclear i try getting clarity if i can't grasp it which only once I ask them to get someone to briefly write it down. I don't understand why she presumed all in my head because she sees an result that I haven't had access too so I'm going to treat it like I've been told too otherwise. Unfortunately the confusion doesn't stop i had an phone call of GP Monday saying need another sample lucky i already thought what if this happened so I was able to ask GP my results instead of stressing about what happened the day before as he didn't need it and probably completely unaware it was inconclusive fir uti but contained blood and couple of other things just awaiting new results. Hopefully you don't feel I've been rude as not my intentions sorry if I have. Hope you have an good day 🙂🙂

[Response in reply to Shashf]

You haven't been rude - so no worries. Those people should have been more understanding to you, as a worried patient. You are right (and have the right) to ask the doctors/nurses to help you and even to be politely pushy for the care you need! (I myself have had to push many times for my mother (I'm her sole carer) and without that push she would have been wrongly sent away, so please keep on until they help you.

All the best with everything

Helen