Accessing Health Care

Training for all medical proffessionals and staff on recognising the signs for undiagnosed autism would be a good start. For example, an individual repeatedly turning up at the surgery struggling to make sense of why they feel the way they do and repeated prescription for antidepressants not helping.....please ask them to look at the obvious to eliminate autism before mis diagnosing. Please ask them to read the nice guidlines x

And recognition of burnout

Yes ! This would be good. Because they usually just think it is depression and encourage you to do more things like seeing people or engaging in activities which is probably very counterproductive…

When I am ill I go as white as a ghost - I’m pale skinned to start with. I once went to A&E with a suspected broken rib and the triage nurse took one look at me and found me a cubicle straight away.

I can relate a lot to not feeling able to ask for time off. I was extremely lucky in one of my worst burnouts that I came across a GP who recognised the urgent need for me to take time off without me having to say anything. I think he may have saved me. I was really unwell. However sadly the same GP got quite dismissive even angry (that someone had suggested it) at the idea that I could be autistic. 

It’’s ok - GPs are quite used to people, autistic and neurotypical only mentioning the real reason for the visit, even if you were conscious of it before the visit, on the way out the door.

out_of_step said:

Indeed. Also, I have real trouble asking for things or i only say if asked directly. I didn't know you could ask for time off work, I thought it was up to the doctor's discretion. I was completely empty and at the end of coping/not coping,, walking out of the GP's door before I thought "I wonder if I should mention it".

I completely understand what you mean! I sometimes don’t provide what is apparently relevant information at various appointments because I have not been asked explicitly!

If only non autistic people could communicate clearly and say what they mean.

Yes, particularly as a list of co-morbidities autistic people can have includes in no particular order OCD, dyspraxia, dyscalculia, dyslexia, ADHD, self harm, Tourette’s, addictive personality, opposition defiance etc I am also bipolar.

Indeed. Also, I have real trouble asking for things or i only say if asked directly. I didn't know you could ask for time off work, I thought it was up to the doctor's discretion. I was completely empty and at the end of coping/not coping,, walking out of the GP's door before I thought "I wonder if I should mention it".

I think we also need to bear in mind there are many people who are older and possibly undiagnosed and wish to remain that way. What help do they get? I think if there was really good awareness, it could be picked up that "this person is possibly autistic therefore we need to communicate with them in a particular way". I've seen the anxiety caused when vague information is given to someone who doesn't do "vague". 

Accessing mental health is a big one. There needs to be better screening of autistic individuals (or people on a pathway to / self diagnosed etc) and what makes up their mental health problems. A barrier I've had is in explaining myself to mental health professionals, alexithymia and masking during talking therapies. Even after I have been diagnosed and thought I could advocate for myself I was still masking.

Another barrier is that, despite being incredibly grateful for our NHS staff, I'm very cynical whenever I have to access healthcare due to past experiences. My back is put up before I've started.

It's really difficult because there's so many problems with healthcare provision any way,  it feels like asking for too much special treatment. Although it'd probably save a lot of money in the long run.

Sorry this message is probably more for Dawn rather than a reply to Ann. So in a roundabout way to cut a long story short : we need advocates who can help us communicate ! We need more specialised talking therapies geared towards communicating more effectively with autistics and addressing the needs we have which neurotypical people don't. 

Indeed. Also, I have real trouble asking for things or i only say if asked directly. I didn't know you could ask for time off work, I thought it was up to the doctor's discretion. I was completely empty and at the end of coping/not coping,, walking out of the GP's door before I thought "I wonder if I should mention it".

I think we also need to bear in mind there are many people who are older and possibly undiagnosed and wish to remain that way. What help do they get? I think if there was really good awareness, it could be picked up that "this person is possibly autistic therefore we need to communicate with them in a particular way". I've seen the anxiety caused when vague information is given to someone who doesn't do "vague". 

Accessing mental health is a big one. There needs to be better screening of autistic individuals (or people on a pathway to / self diagnosed etc) and what makes up their mental health problems. A barrier I've had is in explaining myself to mental health professionals, alexithymia and masking during talking therapies. Even after I have been diagnosed and thought I could advocate for myself I was still masking.

Another barrier is that, despite being incredibly grateful for our NHS staff, I'm very cynical whenever I have to access healthcare due to past experiences. My back is put up before I've started.

It's really difficult because there's so many problems with healthcare provision any way,  it feels like asking for too much special treatment. Although it'd probably save a lot of money in the long run.

Sorry this message is probably more for Dawn rather than a reply to Ann. So in a roundabout way to cut a long story short : we need advocates who can help us communicate ! We need more specialised talking therapies geared towards communicating more effectively with autistics and addressing the needs we have which neurotypical people don't. 

When I am ill I go as white as a ghost - I’m pale skinned to start with. I once went to A&E with a suspected broken rib and the triage nurse took one look at me and found me a cubicle straight away.

I can relate a lot to not feeling able to ask for time off. I was extremely lucky in one of my worst burnouts that I came across a GP who recognised the urgent need for me to take time off without me having to say anything. I think he may have saved me. I was really unwell. However sadly the same GP got quite dismissive even angry (that someone had suggested it) at the idea that I could be autistic. 

It’’s ok - GPs are quite used to people, autistic and neurotypical only mentioning the real reason for the visit, even if you were conscious of it before the visit, on the way out the door.

out_of_step said:

Indeed. Also, I have real trouble asking for things or i only say if asked directly. I didn't know you could ask for time off work, I thought it was up to the doctor's discretion. I was completely empty and at the end of coping/not coping,, walking out of the GP's door before I thought "I wonder if I should mention it".

I completely understand what you mean! I sometimes don’t provide what is apparently relevant information at various appointments because I have not been asked explicitly!

If only non autistic people could communicate clearly and say what they mean.

Yes, particularly as a list of co-morbidities autistic people can have includes in no particular order OCD, dyspraxia, dyscalculia, dyslexia, ADHD, self harm, Tourette’s, addictive personality, opposition defiance etc I am also bipolar.