Arou d four and a half years ago I was on the age old hunt as thinbs were getting desparate and I needed to know what this health issue was as after decades of tests and things everything always came up clear... And eventually in my late 40's I found out what it was as the trail ended up with autiwm and shutdowns.
But during the time I was still looking and was first on the list to be assessed, my Mum was visiting (She does not drive) someone she knows who is retirement age with an u usual health issue and he was trying to sayI may have the same (Somehow the symtoms didn't quite seem to match up. I said that it seemed to e similar to autistic meltdowns, and his wife who was 20 years younger so had another five years to go to retire said "No way are you autistic.You are not in a wheelchair".
Now one may assume his wife had rarely come across autistic people. Well. She happened to be in a long career of teaching, and she was actually teaching in one of the largest schools in Wales with over 2000 pupils. So she had seen a very large number of pupils over the 30+ years she had been teaching...
Is easy to say she was nieve, and she never intended to insult or harm, and she had not really met me before, but she was trying to help when I gaveout the symptoms and my Mum mentioned I had just been on the list to be assessed.
I think the way I get shutdowns may not be so common... Though time and time again I prove to myself that it is shutdowns I was having because once I realized the cause (Which took me decades due to a silly doctor from the past insisting it was allergy, but 25 years of them being my doctors they never once despite the great many times of me asking and even prepared to pay the £2500 allergy testing fee back in 1992-3 when he said how much it cost and I saved and saved and saved, but he refused to do it. Ad the NHS didnt do allergy testing...(When I later found out they did, he never ever had the budget to send me to be tested... I had had to quit so many jobs over the years... and though my Mum kept telling me shethought they were mental, as I was told "Some sort of allergy" I thought it was. (Even argued this point with the doctor who told me he was the expert and knew my body better than I did yet he refused to listen to my description of the symptoms).
Anyway...
What I am getting at here is how few people (Even doctors and other medical staff) know much about autism. School teachers. Nurses. Doctors... The general public! Me!
My concept of autism was a severe wheelchair bound individual that needed 24 hour care essential for the individuals survival, who could hardly say a word... (And I really feel for those who are in this position as life must be tough), but I had no idea!
Yet I went through many struggles... But somehow carried on... Until eventually I reached a point after I passed my mid 40's when the struggle to survive overtook me and I becsme desparate, as I was closing in on what I csll a life or death situation as I felt too ill to work dueto years of prolonged burnout, and yet not ill enough to be diagnosed with anything so I could get no help!
I realize now why. I now have the answers!
But do I tell people in the outside world? Do I risk exposing my personal privacy? Do I go back to those individuals that I met like that schoolteacher (She never taught me) just to explain that she had very likely taught many hundreds of autistic children during her time without even knowing! Children, some of whom had gone through terrible times! Not because it was anyones fault, as the teachers did all they knew how... But because of the schooling enviroment! (And one can't blame governments because they also are doing their best on the resources they have! If one government provides, they often overspend and the next government has to cut back! We can't blame anyone as everyone is trying! Is just how things are!)
The only thing we can do is educate in a way that people understand and make it interesting so that the general public want to find out.
My personal belief is that sending people out in a group with similar looking teeshirts is only going to attract other passing autistic individuals who already know they are on the spectrum or the families and friends of those individuals. Most people will lass by becsuse in their mind, it does not attract them. Yet an interesting talk, where the subject is explored in a way that inspires people to think about how they think... Be they allistic or autistic and not know it, it will often do more to raise awareness and educate, and inspire people to find out more... And also help people realize there is far more to autism than they think.... Who knows! Some of them could be the next psycologists as it could send them into the fascinating world of how people think! Others may just pick up on things so they can help someone in distress, or know when to ease off and give the autisltic person some space... (Be they know they are autistic or not.
One thing when I started learning about autism, is that in the UK there are more people with autism who don't know why they struggle, than those who already know they are autistic. As studies by a top psycologist specializing in training psycologists round the world started going from countryto country and using local psycologists assessed large groups of random people where he did not know if they were autistic or not and no one was told what they were being assessed for (Only the fww autistic who had gone through the assessment process before realized what the assessment was), and he found that every single cou try and people group round the world he had assessed, it came back with 6% would be classed as being on the spectrum. He said sometimes it would be 5.9 or 6.1%, but it didn't fluctute much. He then went and said that as each countries health systems only assess people who approach them as they may already have suspicions... The developed countries with the best healthcare systems tend to have 2.5% of their population officially on the spectrum and third world countries have 1% or less. These figures he gave in his talk (Over an hour long... Ted talk on Youtube).
But going back to my question is shall I tell people who may not understand? I have not even told one of my brothers (As I know at least one of his children are on the spectrum if they are assessed), but he did not believe I was. Youngest brother said (When I mentioned I was on the list to be assessed "I always thought you were weird!" (His humour!). I have actually mentioned it to him but not sure if he was listening at the time due to things going on).
