Published on 12, July, 2020
Hi folks,
Further to my previous...
https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/31784/appointment-with-my-mp---what-do-we-need-most-to-access-our-healthcare
I saw my MP today. No magic answer re my issues, but I didn't expect him to have one.
I did my best to educate him about our barriers to getting through a doctor's door and making ourselves understood, etc.. Your overwhelming voice on e-mailing or texting for appointments was useful as an illustration of a little "reasonable adjustment" not all GPs will make because their training and that of their receptionists is so woefully inadequate that they are unable to recognise it as an adjustment they should make.
The MP said he will:
A) Write to the minister about the training for GPs and other medics, and lack of support for us to access health care
B) Write to the commissioning group for our area as to what is commissioned to support autistic adults without Learning Disability in health care settings.
I'll post a further update when he gets back to me with a response.
Meanwhile, thanks for your views expressed in my last post. They helped me think through the argument.
Thank you! It’s so good that you did this. Change will be slow but raising awareness and challenging some misconceptions about autism and educating people is so important. Really glad it went well! It must have taken a lot of courage to do this. I actually wish I had spoken up this week... I was at a conference and there was a talk about autism on trying to come up with better/more specific/ less ambiguous diagnostic tools. It made me quite upset- The tone of it got to me (referring to developmental disorder, then it gave the impression that an autism diagnosis was a horrible thing...) Apart from that, their approach to making better diagnosis tools (eg based on voice recordings, looking at synchrony in facial expressions and virtual reality based tasks) seemed flawed... no mention of differences in male/female presentation... and surely the voice/ conversation pattern will vary widely depending on who you talk to and what topic (eg. Special interest vs small talk). I considered going to talk to speaker afterwards but then didn’t have energy and wasn’t sure if it would help but I now wish I had.
It’s not easy to speak up. I think it’s great that you did this and I hope it will ultimately result in change!
A lot of really interesting diagnostic tools are actually neurological. There’s been some work on MRI scans. Also I recall hearing about a diagnostic method based upon looking at the nerve fibre patterns in the back of the retina. It would be so much easier to diagnose autism if you could just take a picture of the back of someone’s eye or scan someone’s brain and just say oh yes this Collection of neural patterns equals autism.
www.thelancet.com/.../fulltext