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)

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,

I think what @Newsenmum meant is that the autism spectrum is often considered to be quite linear, when it’s more like a constellation of traits that are unique to the person and change all the time

Fair - in which case, I also agree ;)

When people say "spectrum" as though it's a linear colour scale, I tend to show them the colour wheel from Photoshop (or similar) - that usually prompts a lightbulb moment :)

OP, I understand you are worried, but honestly can't believe you have been so dismissive and rude to someone who is trying to help you understand how varied the experience of being autistic can be. You seem determined to believe that autism is a tragedy, full stop. It really isn't.

It is. I don’t know of anyone who sits there wishing their child has ASD.

It’s a disability. Not a super power

It really isn't, but I can't see you're just not interested in listening to anyone else. I hope you can find peace, whatever the outcome.

You married an autistic man. Clearly you can appreciate that many autistic people have happy lives, albeit with maybe a few more struggles than NT people,

I did indeed

That man wishes he didn’t have ASD every day of his life. He hates the idea that because of him DD might struggle like he does. And he is very mildly impacted

It’s not a few more struggles either.

I understand what the OP is saying.

It may not be a very popular point of view and I understand that too.

I have a close relative with ‘high functioning’ autism. I was looking at jobs he could possibly do yesterday. I couldn’t find a single one.

It isn’t all doom and gloom and we are more enlightened. Girls in particular mask and therefore sometimes cope better (though at a cost to their mental health.) But overall the picture can be a bleak one and we are allowed to fear that.

There is a middle ground. It’s just another neurotype. Do you really not love your husband as he is? Is he a tragedy?? A lot of autistic people have commented on this thread.
Many have also stated that for girls it’s very different.
And not all autistic people like thinking of it as a disability.

perhaps as the world changes you will feel differently and it will be like being gay, which used to be seen as a mental illness. I’m not saying it’s exactly the same, but having a different neurotype could be a little like having a different sexuality. It’s just different. It’s still normal within humanity even if it’s not the standard.

Can you really see no positives to your husbands personality? because being autistic is his entire person. You chose to marry him for part of that!

im pretty sure my husband is. He gets fixated, repetitive and struggles sensory wise. He is also incredibly loyal and committed, very empathetic (a lot of autistic people often are), very successful in what he does. He’s so driven. He’s very different to most men and I love him for it.

And my son has a lot of struggles right now but he is also adorable. He has an incredibly memory and he is very good at his current fixation. I’m sure if we can foster the right one he will do fine. Yes we have bad days as the world is not set up for him. However, I have hope. And I know there are many different ways to live life. It’s up to us as parents to help them find their way.

I personally loathe the whole "autism is a superpower" schtick, but you are wrong to make definitive statements about it being a tragedy. That is not necessarily the case.

My children are not "tragic". They have their challenges, sure but they have so many strengths and excellent qualities not in spite of their Autism, but because of it. Their intense interests mean they are extremely passionate and knowledgeable about subjects that interest them, and will hyper-focus and persevere on a task until they've mastered it. Their ability to find joy in small things that others may not even notice is lovely to see. I have never, not once, wished they weren't Autistic. It's a part of who they are and I wouldn't change them for the world.

I completely agree. I know you’re struggling atm op but it’s quite sad you would see it a tragedy. Your daughter is not your brother.

And with your husband - what I was trying to say was that it’s not just the negative things about him that are autistic. It’s all of him. So the positive parts of him are also autistic. The bits that made him choose him. If there’s nothing you like about him then why are you with him? I really think it’s important to remember that. It’s not some kind of disease, it’s his entire person. It’s who he is. Please try and see it this way. And please love and enjoy your gorgeous girl! She needs that from you. Forget the label if it makes you this unhappy. You won’t get it for years anyway if you ever do!

And with your husband - what I was trying to say was that it’s not just the negative things about him that are autistic. It’s all of him. So the positive parts of him are also autistic.

Exactly that. You can’t separate a person from their autism. They have an autistic brain thinking autistic thoughts. An autistic personality inside an autistic body.

That’s why it’s sad to hear OP say her DH wishes he wasn’t autistic - does he honestly hate everything about himself? No? Well then start reframing things.

It’s not his fault his brain is wired differently. It’s not his fault he finds it hard to do neurotypical things in a neurotypical world.

It’s honestly quite freeing once you rid yourself of all the self-blame and emotional baggage of thinking you’re defective.

I have ADHD which suffers from a few of the same issues with the "quirky/fun/superpower" angle which I do find dismissive as it masks the very real struggles that people go through.

But I do think that the neurotype arguments and neurodiversity movements are in general positive. It sounds to me like your husband is going though a very common process which often happens shortly after diagnosis, a sort of grieving process where it's easy to focus on the difficulties. I can understand that. I definitely went through a bit of that too. Over time though I do think that many neurodivergent people come to terms with their diagnosis and start to see it more neutrally, as being part of who they are. It's been enormously helpful to me to learn about common patterns of ADHD, the research about ADHD brains and what the differences are etc.

I know that autism is different because there are autistic individuals with a very high level of needs that is not the same as somebody who can manage things like marriage, family life, a job. But I do also honestly think that is possible to come to see this in a more neutral way.

My eldest son also has ADHD. My middle one is probably neurodivergent in some way but we don't really know how yet. Because he's already 5 I don't have the worries of any severe general delays or issues because I can see he's not that far out of step with his peers. Still, there's definitely something a little different, and autism has been suggested so I'm branching out from my ADHD-understanding stuff to autism-positive stuff.

It's not because I'm sitting here thinking ooh yay, how brilliant would it be if he's autistic?! It's not like that at all. It's more like - ok. He's clearly quirky and has his own way of being. I want to learn more about that. I wish I could see inside his head. I wish I could understand more of his world. It would make it easier to understand him and help him. And honestly looking at the autism positive content gives that to me. For example, there's a common hand movement that expresses joy. The other day I was at speech therapy with my son and he was entranced by this mechanical bear toy and he was doing the hand movement, and I could recognise that very very pure, very clear joy for him. It made me really happy in that moment to see how excited he was and how that really activated him. But if I had been looking at that hand movement with fear, I might have missed out on that moment. I'm very glad that I didn't because it was very special. I don't know if he's autistic. He might be or he might not. But I know that he was very happy in that moment and he shared a mannerism that is common in autistic individuals. The happiness was the point though. Understanding that this can be a way that some people express excitement helped me spot that in my child and understand him better.