To be terrified DD might have ASD?

[Helfs]

DD is nearly one, and since DH was diagnosed as an adult a few months ago I’ve gone into a rabbit hole around early signs of autism.

When DH received his diagnosis our GP did say they’d let our HV know as there can be a genetic element and they would therefore send out some support and guidance on things to monitor in DD between her 1-2 year checks. As they’d not be able to diagnose or do anything until then.

I didn’t think much of it until she recently started moving her fingers strangely, googling it, it looks like stimming, then she started squinting a bit more than normal - so of course I did the stupid thing of googling that as well.

It has got to the point where it’s consuming me. Although DH scored pretty high in the testing, he is minimally impacted by his ASD, holds down a good job, and although you can tell there are ‘issues’ in terms of large social situations etc. is pretty ok in all other areas (if you didn’t know he had ASD you’d probably just assume anxiety)

My younger brother however is the opposite end of the spectrum, very severely impacted and still needs care at 27 years old.

Growing up seeing how my brother struggled it really is worrying me. And I don’t know whether it’s normal to worry about this or not as she is our first baby (and likely our last too - as if she does have ASD I could never bring another child into the mix based on how badly my brothers diagnosis impacted me growing up)

It didn’t really, I was referring to understanding what genuine fixations are, my worries aren’t a fixation in the same way.

It was the topic of the fixation I was commenting on

Thank you for this, yes at 11 months I can see many some of this might come naturally over the next few months - at least I’m hoping so!

Thank you for this comment, I must admit I didn’t link it to our very long journey to getting DD but reading his has made me think, it might also be adding to why I’m so worried.

After years of trying, a failed adoption journey and then IVF which resulted in DD I think I’m so caught up in worrying the worst will still happen, I still look at her and don’t quite believe she is here and ours forever.

I have a suspicion my son might have it and he is two. Got to admit but I really dislike the autism is a superpower thing. Tell that to the thirty something man I meet every week with his mum who is and will be forever a child. It is a disability and yes I am a bit worried if my son turns out to have it.

I am also deaf. If someone said deafness is a superpower how daft would that sound?

@Helfs I'm so sorry that your experiences weren't as smooth as it can be for some and I really do understand that perspective of waiting for the worst to happen - I 100% could have written what you said about your daughter. Personally, I felt that we were (literally) unbelievably lucky to have our son and that our luck was bound to run out sooner or later. But here we are.

FWIW, I wouldn't now read the slightest thing into what a baby does or how they behave. They're babies, they do all sorts of cute/funny/odd things, most of which they grow out of! Everything's a phase at that stage... Take care x

I do agree, DH is minimally impacted but still struggles more than the ‘average’ person. I don’t know anyone who would actively choose for their child to have ASD, so to say it’s a superpower is a bit

Indeed. I can't change it if he has as my husband likely has it but it would present challenges in his life. I would rather be didn't have it. I don't see why that is taboo? Nobody wants their kids to have something that makes life difficult for their children.

So true. My ds used to groan loudly on and on, and show the whites of his eyes rolling them back in his head when he was falling asleep!
If we were out walking, which we often were, people would look in the pram (expecting to see a cute little bundle of joy) and when he was doing it they just didn't know what to say, it was like a scene from the exorcist 🫣
He doesn't do it now and seems as normal as anyone (13). 🤣

Agree, same here, I don't want my DD to be a different person than who she is, but I don't want her to struggle either. That's just love not a criticism. And of course in the end we all have to accept all of it, you can't wish bits away, but doesn't stop you knowing some things are harder for them and wishing that were not the case.

Sure dd's got strengths, lots of them, but that doesn't mean her autism is a super power, I think saying that is just likely to leave a person feeling they've failed somehow when they are having to try hard at stuff that seems to come easily to others.

It also creates misconceptions in others which can create lack of understanding.

The thing is that being autistic itself isn’t a learning disability - some children are born with learning disabilities alongside being autistic.

I personally try and listen to what autistic people themselves say. I agree that the superpower thing is difficult but it’s also not a tragedy. Often it is neurotypical society and expectations are the issue.

There is a fb group called autism inclusivity where autistic adults can only comment and answer questions/give advice. It’s quite informative and telling.

I think though the chasm opens when the autistic person can't speak and can't use any complex communication system to advocate on their own behalf - there's a huge gulf between someone who needs 24/7 care to be kept safe and someone who would join a FB group to discuss inclusivity. - I don't think tagging learning difficulties on as an afterthought does enough to get this across to the general public

Sending you a hug.
I can understand how you were impacted by your brother. I know having a classically Autistic DC affected their sibling.
Things have moved on in the last 25 years. More people are aware, there are early interventions, schools are more aware.

Be aware but try not to overthink about something that may or may not be autism.
Enjoy your baby for who she is.

Remember autism is a spectrum.

People like your DH like your it doesn't have a massive impact.

A dear friend of mine who is a leading psychiatrist says technically we could all be on the spectrum if we look for perceived differences or problems. Hence why more people are be diagnosed.

I think the issue here is those people are impacted by ‘you don’t know what you don’t know’ in terms of they don’t know or understand how life could be without being impacted by their neurodiversity.

I do believe some go with the superpower thing to make themselves feel better. As honestly why would anyone think struggling more than the norm is a benefit.

Equally, you have no idea what life is like as an autistic person. The superpower thing is too often used as inspiration porn, but that obscures the actual origin of the usage; I have what would be termed an autistic superpower, in that I understand systems (any systems) in their entirety far more quickly and more comprehensively than any NT person I've ever met. A consequence of that is that I've found myself continuously employed since I left university.

I'm also what most would call "low support needs", which also obscures a hell of a lot of detail, not least that the autistic experience varies with time; there have been times in my life where I was at the other end of the support needs scale (notice that I didn't say "spectrum"), and there are times even now - with the extremely controlled environment that I've constructed around myself - that I still have meltdowns, where I'm entirely non-verbal, or when I can't do anything but sit in a darkened room and wait until I'm able to cope with the world again. I understand almost nothing about NT people, I can't communicate with them in anything but a facsimile of what they expect, and their motivations will always be a complete mystery to me.

None of these things would be seen looking in from the outside world. Is it a struggle? Yes, absolutely. The only part that's changed from my younger days is that - with my diagnosis, and talking to other autistic people - I find myself far more able to predict the difficulties and plan ahead, so the impact is vastly reduced.

On the other hand, my autistic brain has enabled me to have a very lucrative career (thanks in part to a lack of comorbidities), to support a loving family, and to generally build a life that I'm incredibly happy to live in. By all reasonable metrics, I'm far more successful and happy with this life than the vast majority of the population...even though I'm "struggling more than the norm" at pretty much all times.

My point is that "normal" is only relative to the life an individual constructs for themselves, and you can't judge the happiness of an autistic person's life by the same metrics as a neurotypical life. We are different, and we don't necessarily want your NT life; in the same way that you don't understand why "struggling more than the normal is a benefit", I'm utterly baffled as to how most people I meet can be happy with their lives at all given their limited perception of the world and weird performative social rituals which must be observed everywhere they go, and yet...they are.

The struggle is that Autism is still classified as a disability.

I don’t know if any other disability where people claim it makes them superhuman in quite the same way.

I can’t imagine struggling to communicate with 80% of the population is anything other than a massive issue for most.

Really? That's what you took from that whole post?

The fact that it's classed as a disability is completely irrelevant to the experience of being autistic.

Look, I get that you want to look at autism as nothing but entirely negative and you see autistic people as nothing but "less than". I'm trying to get you to see that it's nowhere near as cut-and-dried as that.

And please, at least try to understand that what are colloquially called "superpowers" are not superhuman; nobody's claiming that. They're simply things that our perception of the world, caused by our differently-structured brains, allows us to do which most people can't.

These are things that only exceptional NT people can do, but a lot of ND people can do with ease - in the same way that there are many things that only exceptional ND people can do, whereas many NT people can do them with ease.

Less than 10% of those diagnosed with autism have any savant talents. Based on that it’s very unlikely for a child born to be genuinely in the ‘super power’ camp.

Autism is derived from the greek word 'autos' meaning self - meaning a condition in which the person is locked within the self and not expressing and communicating language as typically developing people do. In the US, they have Level 1 autism which is high functioning and verbal, level 3 which is non verbal low functioning autism and Level 2 anything in between. I think though it was a mistake to expand the definition so much, individuals considered high functioning thirty years ago would be seen as significantly learning impaired by today's standards. If a description describes everything in the human condition , it's not going to be very specific or very meaningful. If someone tells me there will be weather tomorrow as i plan a trip to the mountains, i might want more information.

Good grief...are you deliberately trying to miss the point here?

You start off with "ZOMG, I can't believe anybody could be happy with a disability like autism!". Then I describe the actual experience of an actual autistic person (me) and how it relates to happiness, and you ignore almost everything in it so you can focus on the same ignorant rubbish regarding "superpowers".

Less than a third of autistic people are born with comorbid learning difficulties, and in at least half of those cases it's dyslexia or dyscalculia (or both); difficulties, sure, but not massively life-impeding with the tools available in this day and age. That puts the number of "severe" cases that you're concerned about at 10-15% - roughly the same number as you're dismissing right here.

So...which is it? Is 10% a massive concern or something unlikely enough to be unconcerned about?

And I a responding that your experience will make up 10% of those diagnosed with ASD

You are not the norm

Its foolish to believe that it’s likely for a child diagnosed with ASD is just as likely to have your outlook compared to the average.

That's not what I said in the comment you quoted at all!!!!!!

The point is that the eventuality you claim to be so concerned with is just as likely as my experience. You can't dismiss one as unlikely unless you dismiss both.

And, on top of that, you're conveniently ignoring all the negatives in my life (as many people do, I'm pretty used to it).

Here's the thing: I've spoken to orders of magnitude more autistic people than you have. I know the prevalence of issues, and how autistic people can be happy with their lives (often more so than NTs), and how they wished their parents had been able to show them how to build a life that works for them rather than being forced to struggle to do so by trial and error and eventually finding a community that could help them through experience. I was trying to get you to understand that, as a parent to a potentially ND child, it's possible and you have a big part to play in it.

You had an opportunity to actually learn something here, which might have helped both you and your child, but you've chosen to continue trying to Win On The Internet instead.

Until you accept the fact that your understanding of the autistic experience is catastrophically flawed, being influenced only by other NT people with equally poor understanding and ignoring actually autistic people, there is no helping you.

Until then, enjoy your anxiety spiral.

But isn't that how worries work? You worry about the worst case scenario?

I think all people that find contentment and enjoy their life are fortunate in many ways (never all obvs), obviously this is not an outcome exclusive to NT people, but that's not the outcome op is concerned about.

Your experience is certainly encouraging to anyone worrying about their child's future, but doesn't negate the other possibilities (not that you said it did, it just seems to be a moot argument).

In op's shoes I'd be acknowledging the fears are real and based on her family history where Nd has meant no independence for her dB and frequent violence for others to cope with.
Trying to manage those fears so they don't eclipse these early days for her or her DH or DD.
Accepting that only as time goes by will the situation become clear.

I’m terrified my perfect baby girl will have more struggles than most, and that worst case scenario she might need a lifetime of high support needs

I mean this kindly:

If that was a rational justification for the way you feel, you would also be terrified of all the millions of other things that could go wrong in your child's life, rather than fixating purely on the possibility of not just autism, but autism at the most extreme end of a very broad spectrum.

Nobody here can tell you whether your daughter will be diagnosed with autism, any more than they can tell you whether she will ever be knocked down by a car, or develop a brain tumour or leukaemia, or anything else. But my guess is that you aren't spending all your waking hours worrying obsessively about those other things, because you know it's fairly unlikely that they will happen and also that they are beyond your control.

It is understandable, because of your experiences with your brother, that you've picked this one thing to channel your anxiety into. But it's not reasonable.

Anyone's baby might turn out to be autistic. If yours does, the chances of her being at the extreme end of the spectrum are very low because the extreme end of the spectrum applies to a very small number of people. Terror is a disproportionate reaction.

A lot of modern research actually disagrees that autism is a spectrum. Some children who are non verbal until aged 5 or so will suddenly start speaking and be able to succeed in a more ‘typical’ way. Others who seem less impacted at a young age will appear more impacted when older. Everyone is different and it’s hard to pinpoint what is due to being autistic or due to years of trauma due to ABA therapy and various other ‘treatments’ that were seen as helpful in the 90s/00s and before. And sometimes there are learning disabilities alongside which are causing issues - not just being autistic in itself.

I’ve found the books by Luke beardon pretty good on this!

I'm not clear on the terminology you're using there, in terms of "spectrum" - I've not encountered any research that says there isn't a spectrum of traits, but it seems more like you're saying that it's not static, in which case I absolutely agree with you. The implications of the condition can vary even from day to day, but also trend in different directions over much larger timescales.

My experience would (anecdotally, obviously) agree with that - I exactly hit all my early milestones in terms of crawling, walking, speaking etc, only to regress and become non-verbal for a couple of years. Then I picked up again and raced ahead of my peers in developmental terms for a few years. Also anecdotally, I've encountered quite a few autistic folk with similarly "lumpy" development.

Then I continued being ostensibly "normal" to the outside world until around 40, when I suddenly found myself struggling to keep it up, and as a result I retreated significantly from the world. Essentially, my ability to mask and suppress meltdowns/shutdowns had dropped off a cliff even before COVID happened, and that's what prompted me to seek an assessment.

There's very little available research into middle-aged autistic experiences, but I really hope somebody can get a decent-sized study funded at some point. That's probably a topic for another thread, though.