Autism is a 'trend'...?!

This experience mirrors mental health issues and hidden disabilities in particular and frankly, despite our impression that we like to pretend otherwise, we are not as caring a society as we claim or pretend to be - since Covid, I’ve really lost all patience with this kind of hypocrisy, where we see mental health issues being treated as if they were not real illnesses, are the poor relation when it comes to NHS funding, services and supports and hidden disabilities like ours even more so - there is a core cohort of people who simply point-blank refuse to understand any aspect of our condition in order to justify their hypocrisy and nasty attitudes and behaviour towards us for no real reason and frankly, the only way to deal with such people is by way of the criminal law, to teach these people a harsh lesson that they will never forget in a hurry - “coming out” (as autistic) in later life mirrors my own coming out as gay in my teens in the 1980’s and there are many similarities between people living with autism and with LGBT people 

The purpose of a post diagnostic assessment for adults, ideally face-to-face, is to precisely and properly assess level of autism following a formal diagnosis and to properly identify appropriate support going forward - this must become a basic legal entitlement for all autistic people of all ages and a basic legal obligation (duty of care) on all public and private bodies dealing with autism related issues - when a diagnosed autistic person makes a request for support from any autism body (public or private) this is then an automatic legal requirement and obligation placed on that body that they have to follow, as failing to do so is an effective denial to access to relevant avenues of support for the Autistic adult - groups like the NAS should be doing more to cut through the waffle and nonsense, especially from official bodies and by government, refuse to be fobbed off by officialdom, robustly challenge the nonsense of officialdom and get this policy implemented AQAP as it is decades long overdue - the nonsense that you have been forced to endure up to 2024 is totally unacceptable in the 21st century and mirrors my own experience since I was diagnosed in 2021 (online and via Zoom and email) 

How does one get a post diagnostic assessment? What is it and what does it involve and what does it hope to achieve?

After diagnosis, I was left to get on with it, told that I'd managed for 50 years so I could carry on managing.

There was a group that I contacted that was supposed to be for autistic adults across the whole of North Wales, they couldn't get their heads around me not using things like zoom and not knowing how to use a smart phone. I went to one drop in meeting where they asked me what help I would like and whatever I asked about they seemed not to know anything about, or couldn't do it. Their answer to everything seemed to be acting as a human google and sending me links to things I'd already tried, only existed in certain parts of England and just left me to get on with it. I thought it a complete waste of time and public money. Is this usual?

I agree with every word of that video.

Thank you for making and sharing.

Iain said:

That said I'm with you in thinking it isn't cool for me, but then it has been a long, long time since that term was used in relation to me LOL

I've never been 'cool'. That's hard to be  when you combine being physically rather uncoordinated with a high level of social  awkwardness.

Fiona said:

I think it's sad that so many of us feel we need to get the diagnosis. If we lived in a non-judgemental world we wouldn't have to - everyone would just accept differences

I absolutely agree!

Martin said:

This is fed into by the view widespread in the general population that anyone who is reasonably functional in society cannot be autistic. When these people come across autistic people who are in relationships, hold down jobs and pay their mortgage, they are very doubtful of their autistic status.

I think it's a tricky one. It's easier to entertain the possibility such a person is behaviourally autistic, than to see such a person as being  disabled. A random question that crossed my mind. Can disability be defined comparatively? How well does an autistic person who's employed and in a relationship  compare to a demographically matched non autistic person?  I was lucky enough to be with someone for 22 years and married nearly 19 years. It ended when she died. For the last 3 years of her life she had vascular dementia. On the other hand I never had paid employment.

Whilst I can see that such a person is behaviourally autistic, and may or may not be disabled, I struggle to identify with a 'high achieving'  person with an autism diagnosis.
There are more than a few here that I believe fit into that 'high achieving' category. There are conversations here that I  lack the life experience to join in with.

It’s also the reason why post diagnostic assessments are so vital - it’s also another reason why the NAS and others need to actively and robustly challenge myths and misconceptions about autism in the public sphere, using force of law if needs be 

Do you wonder if the word "trend" has become confused? I mean something "trends" on the internet, meaning that its something thats being talked about a lot. Then people go and mistake it for being "trendy", meaning that it's fashionable. I mean if we suddenly became a major earthquake zone instead of a minor one and everyone started looking up earthquakes, it would "trend" online, but would that then mean earthquakes had become "trendy"? I don't think so somehow.

I think it's sad that so many of us feel we need to get the diagnosis. If we lived in a non-judgemental world we wouldn't have to - everyone would just accept differences. Steps out of fantasy-land back to real life...

When someone mentioned that I sounded like her autistic partner, that was the first time I'd considered it. The more I learned about it, the more it resonated. When I reflected back on my work life so far, I realised I had been bullied out of every job due to some aspect of my autistic differences. So I've sought diagnosis to try and protect myself from what seems 'the inevitable'.

But we have always had autists. This book has done some exploration of this:

The Autists: women on the spectrum Paperback –
by Clara Törnvall (Author), Alice E. Olsson (Translator)

I find the general feeling is, “there can’t be that many ‘new’ autistic people, we will go along with it, but you don’t look or act autistic”. Basically we don’t believe you and you’re attention seeking.

One that I can tell people think regarding later diagnosed people is, “You never used to be autistic and you seemed to cope quite well.”

That’s just how I’ve often felt, there are some people who understand autism but they are in the minority, I can’t think of any other condition that requires someone to practically have to plead their case so much. That’s where so much energy is lost.

Long before my autism diagnosis, especially after I’d been rejected (and had never been really accepted) by the gay community for being “different” (in some way - I had no idea at the time) I started to become very interested in the vocation stories of priests, friars, brothers and religious sisters (nuns) both enclosed/contemplative and otherwise as I’d always been searching for God (sometimes in all the wrong places) and although I’d discussed some of this with my Muslim friends who had encouraged me to return to the regular practice of my Catholic faith and to reconcile with my family, I found that the most useful discussions via email about faith that I’d had were with two longtime family friends who were enclosed religious sisters (Poor Clare Nuns) and this eventually led me past Vatican II to the traditional Catholic faith (Mass in Latin), so that by the time I was eventually diagnosed, my Catholic faith was a huge asset - on subsequent visits home and being able to go behind the cloister, joining with the community of Sisters for Divine Office, was a huge step forward on my faith journey, just like how Covid had the effect of strengthening my faith 

It is probably partly due to the large increase in the numbers of people being diagnosed. This is seen by some as an 'epidemic of autism', where it is really due to the recognition by clinicians that autistic people without intellectual disability can be equally validly autistic and can have debilitating problems. This is fed into by the view widespread in the general population that anyone who is reasonably functional in society cannot be autistic. When these people come across autistic people who are in relationships, hold down jobs and pay their mortgage, they are very doubtful of their autistic status.

Autistic Not Alien said:

plenty of desire for knowledge and acceptance

I think that sounds like the important direction of focus.  

I know I am lacking any ambition to join any "cool club". 

However, I am interested in the quest for more knowledge about Autism (both as it means to me and to other Autists), plus I am keen to work towards acceptance of all Autistic people and the availability of individually suitable reasonable adjustments (I suspect that may be the case for a lot of our fellow Community Forum members too).

Even as a group of Autistic people; we are each an individual.

While we may share some of the different styles of thinking, communicating and experiencing things compared with non-Autistic people, I don't believe there is something to be gained by people claiming the label of Autistic when they are not (that sounds about as unwelcome as being forced to wear a really thick Winter coat in the middle of Summer - just too uncomfortable!

I heard from a professional that it’s trendy now. It hurt me a lot. I have problems that I described her and she said, yeah you are probably autistic, but now it’s so trendy, everyone wants to be autistic. As a result I don’t wanna see her anymore and I’m reluctant about seeing any mental health professionals. I don’t even have the label, so I don’t tell anyone what I strongly suspect and I don’t hear the “we are all a little bit autistic” or “it’s trendy, you want attention” thing. I’m tired of my life being too much for me, it’s like always changing roller coaster and I beg the world to stop changing and let me breathe, everything is too much and too fast, I’m often exhausted, overwhelmed, struggle to sleep, sensory and emotional issues and saying that it’s trendy feels like a slap on my face. Definitely lack of empathy. 

I think a lot of people are getting over the stigma that used to come with autism and are trying to "own" it now, so there are going to be some poorly informed drives to try to make it cooler than it is, to feel a part of something good or whatever other plans the posters have to make it more than a disability.

There is a trend in diagnoses being more common for late diagnosed people now as it is gaining some understanding amongst the medical community plus children are being more effectively diagnosed young - so more people are being diagnosed now than ever before.

If it helps some people to feel that it is cool them more power to them - I won't be raining on their parade.

That said I'm with you in thinking it isn't cool for me, but then it has been a long, long time since that term was used in relation to me LOL