Some deeper thoughts

Don't forget, you can have traits but to get actually diagnosed, you have to be having difficulties in life. 

Dsm:

• criterion D: symptoms cause clinically significant impairment in social, occupational, or other important areas of functioning

ICD:

• characteristics result in significant impairment in personal, family, social, educational, occupational or other important areas.

Cited from https://www.autism.org.uk/advice-and-guidance/diagnosis/assessment-and-diagnosis/criteria-and-tools-used-in-an-autism-assessment

So those that are getting diagnosed aren't doing it for fun. It's caused them real difficulties with life and they are just trying to understand themselves. That coupled with suicide rates being so terribly high, it's not like it's a club you want to 'buy' yourself into unless you are suffering and need the understanding to help yourself not fall apart.

Thank you, . Most trusts in the UK have stopped allowing people to go a private pathway through the NHS. Some of the questions are left out online as they cannot do them. I believe it is genuine, but it is not exactly the same as in person, you would like to think if they are permitting it is acceptable.  This website has a document about it a pause to private through the NHS. . May be they are clamping down some way as is there a backlog and perhaps an increase, I am unsure. People can go private if they choose not through the NHS.

www.autism.org.uk/.../our-response-to-autism-assessment-waiting-timesse, .

Some of my family have traits, but they never needed help in their lives so I tend to use that thought. I did have issues with the NHS and mental health and overwhelming in my life. 

Another thing that came to my mind, when it comes to "overdiagnosis" in both conditions- autism and adhd. This overdiagnosis may apply not only to adults. Children too. Especially children, who are addicted to tablets/smartphone/ other technology. The symptoms of this kind of addiction often mimic symptoms of autism and adhd. And it happens, that children get diagnosed with one of them or both because professionals were unable to see through the behaviour. Many kids with technology addiction display traits such as: speech delay, inability to recognise emotions, communication difficulties,  anger management difficulties,  inability to concentrate,  disruption of sleep etc. Sounds pretty much like audhd. So sometimes a diagnosis given to an adult who had many of these symptoms in childhood may be more certain to be correct, than given to a child now. Because someone who is now in their 40's for example had no access to all this wold overstimulation that children have now. So I find the argument, that only children may be diagnosed withthese conditions correctly, wrong.

People often go private, because of astronomically long waiting times. There are also people gwtting their family members with classicsl autism assessed private. It is expensive,  but many people who work can actually afford it. It costs more or less same price of holidays overseas calculating prices of flights, hotel, etc. People have money for holidays, so having money for a private diagnosis is not impossible. I hate traveling, I hate flights and crowds etc. So I don't spend my money on that. Neither on clothes fashion etc. Neither on alcohol or cigarettes. So I have savings and this cosy of 1000 euro is for me absolutely affordable. Because if this I can be assessed with the evidence I have of me having differences and difficulties since my early childhood, I don't need any informant from my family (my husband is enough) and I have to wait only several months, not years. Since now it's 5 months ahead. I already filled out the tests she asked me. Now i only habe to repeat blood tests. Finding a doctor who would offer a date was not easy though. They are mostly fully booked.

The media is telling people now that people can buy a diagnosis or that people are being over diagnosed for a very mild  trait of autism which many have and can cope with. A diagnosis may be just to know and not serve more purpose. I do find it a bit strange sometimes that some late diagnosed are getting a diagnosis after a liftetime without coming into the attention of services before or having a crisis in their lives before this point. I am a female but for me I was more like a boy growing up a typical tomboy in behaviour. This female type exists but not so much in my case. This over diagnosis and buying diagnosis private must be a myth. It was noted that I had autistic traits in 2015 and when I had testing it was a stringent test. They showed it on TV once someone getting a diagnosis without much difficulty with ADHD private. I think the merging with aspergers is a bit difficult for some people. Many diagnosed late would have had aspergers and not what we think of as classical autism. Hopefully it will settle down. I have read of some people getting sternly buffed of unfairly by some accessors now.

Yes, I think you are right. From my experience I can say, NTs usually don't like me the moment they see me. Just instinctively. Fir them, if you are different,  if you don't fit, if your view or opinion is different,  then you are the problem. In my case usually I was the problem and couldn't understand why.

It does sound like your Mums a people pleaser, it might why she plays down or outright denies your autism.

I don't think NT's think about us most of the time, but when we do come to their attention, they don't know how to cope and it seems to be a bit like the stuff around migrants, are they good or bad, if they can do things for us, it's better as they're seen as making a contribution, but if they need things from us then they're often seen as a problem. I see this stuff starting to be played out in discussions about ND and autism in particular, we're not all dribbling half wits nor are we all tech genius's, if you can't be pigeon holed in an NT world then you're scary and may need to be got rid of.

Your story is a good example of people's needs changing over time. I heard from my mom that I can't be autistic,  because I'm creative and find non standard solutions to problems. Sometimes she calls my ideas brilliant or genius. So in her opinion it excludes autism. She remembers my terrible meltdowns out of nowhere,  that lasted 2 hours. I was a kid, she said she had no idea what to do with it, so she used to lock me in my room till I calmed down. I asked her if she didn't get the idea to maybe take me to a doctor. So maybe if I was taken care of, I would also be diagnosed earlier.

It drives me insane when people think there's only one type of autism and they tell me that I'm just a little slow or just a little eccentric and I can't possibly be autistic because I'm too smart.  Pardon me, but I was diagnosed at the age of 5.  I've learned to adapt over time.  People who say things like this didn't know me when I was 5.

TheCatWoman said:

Lots of people do have higher support needs, but that shouldn't invalidate those of us who don't, we might have quite high support need in some areas some of the time, but because our needs aren't consistent they get overlooked and overruled

Absolutely agree 

The issue with being taken advantage of is not exclusive to autistic people,  but yes we are more prone to that. In my case there is the problem that it takes me too much time to figure out what actually happened and maybe I shouldn't have done, helped etc. Or I don't understand it myself, rather from someone else who tells me. If I'm prepared to some situation or conversation,  I have no issues with refusing if I have to. It's not all about people pleasing, but with confusion. There may be various reasons why people are being taken advantage of. For example my mom wants to save the world and help everyone so that people talk good about her. I don't know if it works, but this is her motivation to do everything to please people around. There is probably a hurt and very low self esteem beneath. 

Is that "just" an autistic thing though? Lots of people struggle with emotional literacry, and manipulative people will home in on those less able to say no to them, but it is something that autistic people seen particularly prone too.

Lots of people do have higher support needs, but that shouldn't invalidate those of us who don't, we might have quite high support need in some areas some of the time, but because our needs aren't consistent they get overlooked and overruled

I work in a profession where I meet many people and have had awkward moments where parents of Autistic Children asked what it is like being Autistic in the profession I work in, I have always replied with "I am not going to discuss my private life", I have an assessment coming up soon, for me, it is for me to know more about myself and also to help me at work, there are times where I feel I need to make it official to help my bosses understand me more.

I can agree and maybe also a bit disagree. I don't think NTs care that much about them not being so typical. There is still the autism with high support needs. Some parents of profoundly autistic people get angry, that now they have to explain, that their child has high support needs. I don't see anything wrong in it. Autistic level 3 support is quite clear. 

For me autism is not just a way of being. It's me being more vulnerable and needing protection,  therapy and support to be able to self advocate. It's also limited ability to recognise my feelings and the state of my body. It's the difficulty recognising when I should say 'stop' to someone etc. And many other difficulties. I let that family see, that their son may also achieve things in life. I told them, what support I needed but never received and answered to their questions about my perception to help them understand better their son's behaviour. Honestly when I see this boy in the nursery,  while dropping off or picking up my daughter,  I have an impression that I look at myself when I was at his age. Sometimes he greets me with smile, I respond. I look at him and think: "I wish your life won't be hard, I wish you all best and support and success".

In my case I need more like proof and protection because the issue of me being a victim of abuse at work is still not behind and I also need proof of being unable to do some things at work despite being exceptionally good at other things. I also want to join a local support group and here it's possible only with the formal diagnosis. I am not profoundly disabled, I don't have intellectual disability,  I don't need assistance 24/7 it doesn't mean I'm perfectly fine. I receive help from my family members in everyday life. If one day I have to live alone, then most probably I would need some assistance. I described a lot of my problems and experiences to my therapist and he said there is no other condition coming to his mind than Asperger Syndrome. I have Therapie sessions since autumn 2024. Germany still operates in ICD-10 criteria and diagnose Asperger Syndrome.

Uta Frith said, that late diagnosed autistic have nothing in common with each other. Did she actually try to interact with some of them... 

I think that the flap over late diagnosed adults, is mostly just that a flap, parents get scared that they've done something wrong when their child gets diagnosed as part of the ever present parental guilt trap that we all seem to fall into at some point. None of it is helped by the ignorant staements put out by the like's of US Health Secretary Kenedy, listing all the things that "we" can't or won't be able to do. Later diagnosis  shows the lie to much of this, it shows people going about thier lives quite happily, having jobs, relationships and children of thier own. Yes we have problems with some things, but so does everybody and some of our problems have nothing to do with autism.

The more people who are being diagnosed, the more normal ND including autism is starting to look and thats scary for a lot of people, we look just like them, we hide in plain sight, all the while we've got this "thing" that maybe threatening. It's also a nice trope for politicians to argue over, are we being "woke" or are we just recognising something thats always been there?

Life changes as we get older so obviously autistic life will change too, as a society we're uncomfortable with aging and the changes that come with it for example I just read something in the Guardian about how you're more likely to get a dog or a bloke named Chris in a film than a woman who's over 60. AS we age e might need things like HRT, joints replacing, we might need adjustments at work or different work as our aging bodies can no longer do the things they did when we were younger. These things exist across spectrums, being ND or not shouldn't determine the need for new knees, nor should it determine any psychological help we may need, these things are facts of life.

Humans like to catagorise things and one of those catagories is "us and them" if high functioning Autistic people can be "undiagnosed" then it create more "us" and a smaller group of "them", who will also be less able to self advocate and demand their rightful place in society.

I think you did a really good thing in taking the fear and some of the stigma away from this family and helping them to see that being autistic is just a way of being and not a life sentence of misery.

I actually think the real problem with all these debates, are the NT's, they're finding they're not so typical and it's making them look at what being human really means not just abiding to a set of assumptions.

The concern about the late diagnosis of autism in adults is hugely overblown. It seems to stem from a fear that all the support that autistic adults will require will be expensive for health systems. This is hogwash, most late diagnosed autistic adults have not received any support before diagnosis and will most probably not require, or be eligible for, support afterwards - as governmental financial support is individually assessed. Accommodations at places of work are very often essentially costless, or of very low financial cost. 

This just leaves the 'autistic mom syndrome', whose argument is that only people who have very high support needs and cannot live independent lives can be called 'autistic'. This is tantamount to saying that only people with paraplegia or double amputees in wheelchairs can be said to be  disabled in regard to mobility and that no one with rheumatoid arthritis or osteoarthritis who have limited and painful mobility can claim to be disabled. The argument that a person can only be autistic if their autism is immediately apparent to an unqualified onlooker is so logically flawed that it has no merit whatsoever.