How many of us are there really?

Yes, it's not something i've ever mentioned at work, amongst colleagues or acquaintances and it's a thorny issue, I find. 

The thing is, though, I really, really wish that somene had told me earlier on in life, even if my initial reaction might have been negative.  As a family, being left to find out on our own has led to severe mental health issues, burnout, breakdown and suicidality.  Only after nearly 4 years with crisis teams and early intervention services was it mentioned.  I was hoping to save other branches of the family from this experience.   

Yes, same for me. Like how I get on with certain work colleagues when others aren’t keen on them because they are blunt, direct, know it all, do things their own way, don’t conform, don’t socialise, controlling etc. I know they’re on the spectrum and don’t realise it.
I do discuss my findings with those close to me, but I’ve found it’s best not to suggest anything to anyone as it causes too much stress. They usually find out of their own accord, and then I say ‘I knew’…

Dawn said:

Yeah, I do sometimes think we are a magnet for eachother.

Yes I definitely agree.

Exactly,  I think that burnout is the result of trauma, but by the time that occurs getting out there and engaging with the usual kinds of therapies offered can be more than a little challenging.  The therapies offered on the NHS often badly let non autistics down, but when they have no idea about trauma or autism and offer 6 sessions of very basic CBT in a one-size-fits-all approach, it can prove disastrous for us.  And the person might well think, "Oh.  Here's another person who wants to impose their NT agenda.  I knew this wouldn't help!"  As for advice for families where all members are already adults - non existent!

And yet still the general advice is to "seek help", as if we never thought of that.  :(

I think I've been automatically drawn to other autistic people all my life, without ever realising what was going on.  Now I think I can spot it, but if I mention it even jsut as a possiblity within some branches of the family, they become defensive and think I want to diagnose everyone. 

Amen especially to your last paragraph.

We are traumatised because we weren't  identified and now the system doesn't know what to with us.

Yes, I have very mixed feelings too.  But the diagnositc criteria really need revising and, as a family, we are really suffering from very late identification.  Given that nursery teachers, primary and secondary school teachers, health visitors, GPs and a whole host of other medical professionals absolutely failed to see it, I'm thinking we need a way through that cuts through all of the uncertainty.  That said, it's looking as though it's down to gene clusters and not one dominant gene so even when it comes to genetics it's enormously problematic, i think (and there's me, hoping for a heel *** test for our babies).  

As things unfolded for us, we were only identified after severe breakdown/burnout and even then it took a very long time.  We're still struggling in the aftermath of all of this and I can't help wondering whether anything might have made a difference.  If not genetics, then a huge improvement in awareness and identification through other means would have to occur.  And I still feel angry about it all, even a couple of years after my eventual diagnosis at age 55.  

Appropriate therapies would be good, especially trauma-informed with therapists who are themselves neurodivergent, but even then, if someone has been almost totally destroyed due to late identification, they might be unlikely to engage with this. :(   

Of the 9 people (outside of my immediate family) I have informed that I have an ASC diagnosis, one had already self-diagnosed (she is a medical doctor) and another has an autistic son. This suggests to me that it is not all that uncommon.

Yeah, that's what I mean about the blurry boarder of the spectrum. My husband would no way qualify for a diagnosis; the social /communication deficit/ difference isn't there, but so much about his thought patterns are very ND and such a creature of habit. And, of course, that is why I'd fall for him.

There is a big mid ground I think of people with some traits, who for all they are coping just nicely in the NT world, might like a few of the adaptations we benefit from too.

Yeah, I do sometimes think we are a magnet for eachother. Whether I can tell though might depend on how good their compensation strategies are in social situations. One colleague we could tell right off, he can't mask well and I don't think he realises that we like him as he is. I wish he'd just fess up sometimes, then we can go 'thank god for that, join the club'. 

Another is really open about it but she is so good with people, you wouldn't guess how hard she's really working at that, until something triggers one of her anxieties. 

What an interesting thread.  I have just told my mum that I have ASD and at first she couldn’t see it but now she has done her own test and is borderline.  Now I know what to look for I think there are many with at least some traits so the total number is mush higher than 1% 

I can notice other autistic people before they even tell me, it just seems obvious and like an intuitive connection. My best friend is autistic and I knew from when I first met him. It is why we both get on so well.

I have mixed feelings about the genetics. Could it help with early diagnosis? Might my life have been easier had it been known when I was born, not waiting till I'm nearly 57 to find out?

But there is a danger that some people might not choose to progress with their pregnancy if known pre-birth, denying the world some awesome people. I can see that one has a dangerous flip side, indeed.

I am very interested in the neurology research which might establish which parts of our brains might be firing up differently for different people on the Spectrum. 

We need a lot of research into appropriate therapies for us too.

Oh yeah, sometimes I see it.

Yes indeed, there is a pace and noise of life in our times which is super hard for us, but not good for anyone.

Personally, I suspect we are a relatively small minority, albeit bigger than anyone has a handle on. I also think the edges of the spectrum are blurry and there are a good many folks who aren't autistic, but not exactly neuro typical either.

 Considering we are those that ‘think differently’ than the masses, I think we are huge in number. I mean in my family, 2 are self diagnosed, 2 are diagnosed, at least 8 are suspected (mostly now 50+)….I’ve told my ex he is Autistic. It was staring me in the face, and I only just realised. Explains why we got on so well. But also explains why he is so incredibly difficult and naive.

At work, there are 1-2 diagnosed that I know of, and a handful I suspect and they don’t even realise. All the rest seem to have a sibling or child with Autism or ADHD….
Actually, this should be a new question.  How many of you can seem to spot Autism or ADHD in others?

This is the one thing that makes me wonder about research into genetic testing.  I'm generally very suspicious of it and would vastly prefer autistic-led research into areas which are actually helpful to us.  But, at the same time, I look back and wonder how on earth we, as a family, were supposed to know we're autistic.  An awful lot of suffering has been generated due to not being identified much earlier on and the diagnostic criteria are quite narrow and deficit-based.  Without much wider awareness, i'm sure this is still happening to some families and I wish there were a simple, accessible way of knowing.  

I honestly believe that their perceived majority will be steadily eroded as more and more people realise they're autistic or otherwise neurodivergent.  I'm sure there'll be plenty within my own family, once the penny drops.  Yes, the world is NT designed, but we're gathering force and, after all, there are many non autistics who are very unhappy with this design too.   

I have a crazy hypothesis

our families are guardians. at least where mine is there is something LOL

it's based on assumption that a phenotype with so many genes inside, cannot be robust for so many generations, so it looks like artificial modification

i am bit of a fan of conspiracy theories, with one of my friends 

except someone erased our memories

It will be more than 1%, but the true figure is unknowable - you'd have to have a reliable test for autism to work out the right percentage - some people may not be aware, or admit, they have autism, so asking everyone wouldn't be accurate.  The diagnosed rate is all there is to go by right now.