To think autism gets worse with each generation

Yes, my therapist worked out I was AuDHD after working with her to help me with yet another nervous breakdown due to more trauma (PTSD)

I had no idea I was ND. But I couldn't work out why I was struggling, was such an oddball, why I was getting burnt out, struggling with deception after deception after deception. Some of which resulted in domestic violence, others ending in rape.

So yeah. Underlying cause was neurodiversity, AuDHD.

Yes that's exactly how it happened for us.

Yes, that's fair.

Thanks I'll let the professor know in the research we took part in who mapped our genomes, I'm sure she'll appreciate it 👍 I confidently asert that his mutation is highly likely to have caused or play a large part in his autism (I used similar wording in my post) because that is what I've been told by the researchers.

"Time also to be more interested in what research questions autistic people themselves feel to be most of value."

Unfortunately the people with autism I'm interested aren't able asert what questions they'd like to be asked or feel is most valuable because well, they are severly impacted and don't have that ability. If we only ask those who are able to put their values forward a whole group of people, who are severly disabled are going to be left out of research or rather left out of more research than they already have.

In fact there's been at 25 years plus genetic research and still no reliable diagnostic markers are in use clinically. Time to be more interested in the interplay between genes and other biological and developmental factors within the individual, AND the interplay with environment, including influence on the expression of genes. Time also to be more interested in what research questions autistic people themselves feel to be most of value.

People confidently asserting that genetic 'mutations' are responsible for autism are out of touch with scientific developments (as well as not having any self-awareness as to how offensive they are being).

Eva Loth's really excellent paper in Frontiers (Vol 14, Feb 2023), is well worth a read and sets out the need to integrate an understanding of the interactions between brain, body and environment in order to understand autistic presentations:

'In autism research, we tend to separately investigate immune markers, metabolomics, brain structure or brain function as candidate marker for particular outcomes. However, the focus on specific “parts” of an individual neglects (1) that the interaction between them can produce a whole that is bigger than the sum of its parts—emergent properties, (2) the context or condition in which particular characteristics or processes operate, while (3) the focus on individuals neglects interactions between the person and their social environment'.

I definitely knew something was up before my son came along, then when he came along I really struggled, then he started presenting challenges and although his consultant psychiatrist didn't directly say "go get checked out" she heavily heavily implied it and it was a push for me to finally seek a diagnosis. We were both diagnosed within 6 months of eachother.

My son getting his diagnosis was taken into consideration when they considered I was autistic.

I think irrespective of whether he got a diagnosis or not I was at a point in my life where I would have sought one for myself anyway and they had sufficient evidence to prove it.

So I agree with you that it can happen for some parents of autistic children that way, but it's not the case for all autistic parents of autistic children.

I wasn't making a comment on whether you're autistic - that's not really relevant to my point.

I was saying that when you speak to lots of late-diagnosed autistic people (rather than autistic parents, or parents of autistic kids), you realise that the number of people late-diagnosed because their children were is really quite small compared with the total. On the other hand, your assertion ("Late diagnosed autism = parent has child with acute needs and as part of the assessment, the parent is also diagnosed") suggests that's the only way it happens, and that's not just false, it's not even close.

You've got a point, I didn't make it clear enough/explain it properly.

Thanks for not ripping into me.

I think the problem is the wording of your two posts differs somewhat. Yes, some autistic parents are diagnosed following their DC being diagnosed, but they aren’t diagnosed as part of their DC’s assessment.

Already actually autistic (well, AuDHD, as is DD2, DD1 is ADHD inattentive, DP is awaiting assessment since both his DD and DS have started the process of assessment and diagnosis), ta.

Parents are frequently diagnosed following the diagnosis process for their children, leading to the late diagnosis phenomena, as it's the diagnosis for their child which leads to their actually being taken seriously/the lightbulb going on for the first time with the GP.

Erm... yes they absolutely are! At least my husband and I certainly were! We were asked not only about ourselves but also about our families (eg our siblings, our parents etc)!

I presume what she means is that parents are questioned about themselves as part of the diagnostic process for their child

That doesn't happen either.

I presume what she means is that parents are questioned about themselves as part of the diagnostic process for their child, realise as a result of those questions that they may be ND themselves, so then get an assessment for themselves. That's how I read it anyway (and that's how it happened for me and my husband). Once you start unpicking family traits and histories, things start to unravel quite quickly!

"Significant impact" doesn't mean you can't do these things and you can't have a happy life - ours is mostly, very happy. But it means that it takes more work and is more of a challenge to do that.
I think this sums up my feelings.

Just to add I love to see more research on the genetics of autism, I think it could be incredibly helpful moving forward. It's a shame that research gets shut down because of fear.

I couldn't bring myself to read all the posts, so haven't read the full thread.

Ds has complex needs (severe autism). We took part in genetic testing with genome mapping. It is likely that the genetic changes he has have caused his autism or play a large part in it. The mutations he has neither myself of dh have. If it is genetic in my son's case it isn't hereditary.

I also have another son who doesn't have autism. They are both amazing people but completely opposite in terms of autism.

Because I mix with families who have children similar to mine ( too autistic for the autism groups/ not trendy enough for nd groups/ use language like severe or profound and have to deal with issues that aa can't comprehend) I know of a woman who had twins. One is more Impacted than my son and the other doesn't have autism.

Encephalitis is being mentioned more and more in some groups I frequent or the lack of it being diagnosed. There is also a theory I've seen that in particular pertains to regressive autism (my son had) which I think makes sense.

The autism diagnosis itself has evolved and now encompasses varying presentations which previously wouldt have recieveda dx.

My cynical side wonders if an autism catch all umbrella is also cheaper than investigating and diagnosing multiple different conditions.

Parents are never diagnosed as part of the child's assessment

Not. Even. Slightly.

Try joining a community of actual autistic people, real-world or online. The majority of late-diagnosed folk are people who ran out of the energy to maintain the mask, and people around them began to notice and make subtle hints that - obviously - had to get less subtle over time until everyone reaches breaking point.

And those are only the ones who can afford a private diagnosis, because GPs tend to gatekeep diagnostic services and justify it with the fact that there aren't any support services available for adults, so there's no point.

At least two expert assessors form judgments based on development history, medical history, reports from settings other than home, and observations usually using standard assessment tools such as ADOS which require the person being assessed to perform tasks in front of the assessor. So not just based on self-report, nor sure why you keep repeating this.

NICE assessment guidelines

Late diagnosed autism = parent has child with acute needs and as part of the assessment, the parent is also diagnosed.

An artefact of diagnosis, not anything remotely related to eugenics or autism 'getting worse'.

they're quite thorough

This is my experience too. In fact, my NHS assessment, diagnosis and report was more in-depth than my DC’s NHS assessments, diagnoses and reports.

My DH would seem to fit your criteria. But he's working twice as hard and long as peers to progress half as slow - he will probably never have the career he's intellectually capable of. He's on medication for depression, and even then, every couple of years a stressful period at work will get him close to a nervous breakdown. He gets himself into messes at work that other people just... Wouldn't. I'm not sure he'll make staying in his career until retirement. He only functions because I do almost everything at home. I don't think he's aware of how e.g. our bills are paid, kids' school timetables, required house maintenance, etc because he just can't retain all that and work. He is a loving and engaged father but I'm not sure he could survive being a functional working parent without me. He has friendships that are meaningful and long lasting, but social engagements are physically wearying for him.

"Significant impact" doesn't mean you can't do these things and you can't have a happy life - ours is mostly, very happy. But it means that it takes more work and is more of a challenge to do that.

I have two DDs, my oldest I am pretty sure is autistic (no official diagnosis), she has sensory issues such as with the feeling of clothing and with food! Prefers most of her food bland etc.

She also has struggle with anxiety and socialising, however, is learning to mask more and appear more ‘normal’.

My daughter never has melt downs though, she is high functioning and will live an independent life as an adult. I suspect I’m also on the spectrum, but I struggle more with anxiety and with friendships, but I don’t have any issues with food or clothing.

We are all different and the spectrum is so wide. I’m not sure I believe, your children autism will be worse or better…

My youngest DD appears NT so far, no speech delay and hitting all mile stones unlike her older sister. Its just pot luck.

Your story mirrors mine almost entirely. Solidarity ❤️

Well in my case if made me more susceptible to work related stress, lots of long periods of sickness or burning myself out because I had told myself I wasn't really sick, it made me more susceptible to being abused because I was told that their reactions were perfectly valid responses to my autistic behaviour by them and their supporters who I had wrongly assumed had my back. It made me more susceptible to financial abuse and being forced to take out loans and lines of credit to stay afloat because I lack the social awareness to risk assess or assess what is "normal" in society.

Being autistic did not stop my reproductive organs from working. Some of my autistic friends thrive off the routine that you implement when you have children so having kids for them hasn't had much of an impact as they have built routines and coping strategies into their lives.

It was highlighted that I had significant social impairment, was at risk of abuse going forward, have accrued over 40k debt in my name to cover for the amount of money the people in my life have cost me.

Working, having a relationship and having kids doesn't mean that I haven't faced any trouble with these areas of my life but more importantly there are many other aspects of my life that being autistic has quite significantly impacted.

So you might look from the outside and think I have these things, and so I don't have any significant impairments but you've not got a clue what happens behind closed doors. Not with me an Internet stranger and not with your friends and family.

Also having been through the diagnostic process I can tell you they're quite thorough at digging into all of the areas in life where you have been at a detriment for the way your brain works. Actual qualified professionals, several of them, and then it's taken to a multidisciplinary hearing where you're cross examined for your deficits.

It's really quite offensive that you keep trotting out this notion that someone who has had relationships, employment or children aren't significantly impaired because you're not in the least bit qualified to make that decision.