To think autism gets worse with each generation

[eastereggg]

Genuine question.

Why does it seem that autism gets worse with each generation?

Example: a mother is a late diagnosed autistic but her child is very clearly autistic and displays much more severe characteristics than she did. The grandmother would probably be diagnosed autistic today as well.

There seems to be a recurring pattern that I'm seeing where autism is getting more severe with each generation. Is there an explanation for this?

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

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.

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

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.

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.

"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.

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!

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.

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)!

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.

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.

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

Thanks for not ripping into me.

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.

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.

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'.

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.

Yes, that's fair.

Yes that's exactly how it happened for us.

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.