Published on 12, July, 2020
I’m 53 and deep down have always known that my outlook is very different to others.
For as long as I can remember I’ve struggled with things that some find easy and even exciting, I have just developed strategies to cope with the demands of life, mainly ensuring I’m busy, I’m in control and things are on my terms. This obviously doesn’t always work and relationships have suffered.
I haven’t sought help or a diagnosis before as I always thought it was just me, but the more the world has changed and the more we are encouraged to accept and celebrate our differences the more I have realised I may not be on my own.
However, what will having a diagnosis change for me, I will still feel all the things I have felt for the last 40 plus years, the anxiety won’t go away when my husband suggests going somewhere different on holiday, I won’t suddenly be able to maintain friendships.
Hi, I’m 55 and going through an assessment at the moment, you’re right nothing will actually change, maybe some help at airports and hospital appointments . For me it’s the validation I need, the definitive answer. I do already know the answer, unfortunately the way my brain works, it needs proof. I have quite a lot of medical people on my wife’s side of the family, someone wrote on here a few days ago that they were told they shouldn’t say they are autistic without a diagnosis. I found that really hurtful, it’s the first question I get asked by the family members, “ have you actually been diagnosed?” It’s more or less, “ you don’t look autistic,” The fact is, they don’t work in the field of autism. I’ve read 10 times more on autism than they ever will. Sorry to rattle on,
Roy, how do you get the help at hospital appointments? We're turning in circles. Social Services say it's mental health, it definitely isn't - it's a sensory not mental health issue anyway. Mind CASS were clueless as to what to do. PiP (to buy in the help) accept I cannot access medical care but give me no points under 'access to medical care', so that's a no go. My special care dentistry referred to the learning disability and autism team, who it turns out are commissioned to help ONLY if you have both a learning disability AND autism. There is an advocacy agency, who are great, but they can only advocate not provide the other supports and to get that for a single GP's appointment means ringing them, waiting for two weeks for them to allocate someone and then meet with them before an appointment can be arranged - no good if I need an appointment tomorrow. Everyone says "go see your autism charity" as though I have a personal autism charity poised to jump to every time I need medical appointment. OH at work, a social prescriber and my dentist are all trying to find support somewhere just so I can have my treatment, only to be sent around the same circles. This has been going on for over a year. Truth is nothing is commissioned to allow me to access health care.
If you've found another way. I'd be interested.
Hi Dawn, personally I haven’t had any help in that department, I’m not yet diagnosed. I was more hoping. My wife was an endoscopy nurse for over ten years in a large hospital. To be honest if I needed treatment, she normally knew people in that unit, it’s a bit like “mates rates,” I could wait in the nurses office not the waiting room, I always got the nice biscuits.
From what she has told me, they would have a referral from a gp, it very rarely mentioned the persons autism, they only have a potted history of the person. The person needs to inform the unit before the appointment, they have a quiet room and patients can ask for same sex staff. I’ve never had to deal with the bureaucracy like you have, it does still seem that the world sees autism as only a childhood condition.
Thanks for the brief. The whole world is clueless and passes the problem on to someone else I think, leaving autistic person to self-advocate when they can barely communicate, I think. And no body thinks that an autistic person without intellectual impairments needs anything. Phew!
My ex-husband was a nurse and used to be able to advocate for me like that. Sadly, no one is going to get it now.