It’s likely that my DD (17 months) might have autism. Will she be able to lead a somewhat normal life?

[sha160528]

Hi,
Not really an AIBU but posted here for traffic

My DD is 17 months and after a visit from the HV and Early Years Worker today, I was told that it is likely that DD will receive an Autism diagnosis at some point in her life - she didn’t say it’s a definite diagnosis but based on her observations and the test she did - it is likely especially as her dad is Autistic too.

I didn’t get that much guidance in regards to what this will mean for DD. I guess as DD is still quite young it’s hard to say, but I’ve just had a little cry as I worry about what this means for DD long-term. Will she make meaningful friendships? Will she be bullied? What if she’s discriminated in the world of work? What if people try to use her for their own gain? Etc

I am willing to engage in whatever help I can give to her but I worry about the future for her and I know no one can say exactly where she’ll sit on the spectrum but I feel like I’m mourning the loss of the life my DD could’ve had (I don’t have anything against Autism but both her dad and my sister have experienced the above negative feelings of rejection etc in society) and it worries me

Forgot to add the attachment …

it might be a good idea to have yourself tested as well ?
in the mean time try to put your concerns aside and enjoy the child you have , two people have said they don’t have concerns and she is mostly meeting all milestones so even if she is autistic it’s unlike to dramatically effect her in life so please relax and enjoy your baby

Autism is a massive spectrum, nobody on here can say how it could affect the Ops daughter if she is autistic
It's unhelpful to minimise it and the impact it has on people.

It’s not really about adapting or loving our children.

as parents we want our children to have every advantage possible and travel through life as easily as possible. Life is all ups and downs but when we find out that our child will have a disability that will make their life more challenging than others it’s gut wrenching.

I adore my children and wouldn’t have them any other way. I would change the constant fucking fight for an education that meets their needs. I’d change the world so it accepted them as they are. I’d take my sons anxiety away (but leave his bravery, he leaves me in absolute awe at his bravery)

The world has not been kind for my children and I can’t see that changing much in the mid future. It has been an uphill road for us ti access an education that allows them to fulfill their potential, how they will find meaningful work is a hurdle I’m not yet ready to even attempt to overcome.

The good thing is OP you're ahead of the game in knowing that there's ASD in both families and that she may have inherited it. That means you already have an eye out for it and an awareness that many parents won't. You also have a positive attitude towards it. I think 17 months can be tricky age to diagnose all but the most severe cases. It's so young and children change so much.

I would though honestly treat her like she does have ASD as she gets older - all that means is really good parenting. Things like preparing her for things that are going to happen during the day, warning her before any transitions, explaining things simply and clearly to her, talking to her about feelings and emotions and labelling them, noticing when she is hungry/hot/thirsty/tired. Breaking everything down into small steps that she can cope with and building up slowly. Lots of time to decompress doing things she loves at home.

Helicopter parenting actually works really well for kids with ASD because it's basically parents enabling their kids to cope and smoothing the way for them - I remember reading it in one of Tony Attwood's books. I was a major helicopter parent! DS is now living away from home doing a degree apprenticeship and has a group of friends. It hasn't always been so easy and there were certainly times I thought he'd never have friends or be able to get a job due to interview anxiety (thank god for giving questions ahead of time to autistic candidates) - but now he's flying and loving life. Good luck OP! She's got a mum who loves her so much so she's already ahead of many kids.

@Sandy792 thank you for the lonely message. I’ve found it really helpful to read.

I think that’s definitely a good way to look at it - treating her as if she does has ASD but still allowing her to be as independent as possible.

Would you say in your case helicopter parenting has allowed your DC to feel more independent as an adult as those additional needs he had as a ND child were met which gave him the confidence to then take the lead? I always read that as much as they’ll have things they struggle with to let them be as independent as possible as you’re taking that independence away from them and making them dependent otherwise which will cause issues long-term. I’m intrigued as to how to ‘helicopter parent’ whilst still promoting independence

@LoveSandbanks this sums it up perfectly. I’ve received a lot of stick on a few threads due to my anxiety in relation to a (potential) diagnosis and I think people don’t understand that as a mother I’m worried about what it’ll mean for her and how her future will be as a result of a (potential) diagnosis. I understand that it’s too early to fully tell etc but that doesn’t stop the worry. Unless I ask these questions and see what support is out there based on other people’s experiences I won’t be able to navigate the next few years smoothly.

I’ve worked in schools and I also agree that no magic wand will be waved in the mid future to give ND children the help that they need consistently throughout their education/career. We’ve still got a way to go before that can happen so it’s down to us parents to try to navigate that and often that can feel like a lonely journey so I appreciate the way you’ve put it as you do worry because you care and love them. Of course you’ll always love them, you love them that much that you don’t want the world to be cruel to them over something that they have no control over

@x2boysthank you for mentioning this. I feel like there’s a lot of minimising on these threads

I've commented further upthread but honestly she sounds so, so similar to mine. We had a chat with a health visitor recently regarding lack of speech and pointing and they just weren't worried yet. He's only just started pointng this week with 1 finger- and only just before that was using an open hand gesture. Still doesn't have many words at all but has come out with the most random ones ocassionally, still no 'mummy' or 'daddy' though

@teksab how old is your DC? She does do what I think is open hand pointing… the issue is I can’t tell the difference between open hand pointing and reaching? Would they be classed as the same thing? Not sure! My DD has quite a decent amount of words but no actual one finger pointing yet

very nearly 20 months - good point! I guess I've assumed they're the same thing? it's like a gesture and a half hearted reach rather than a point? I guess we you were to point at something enthusiastically our bodies would reach towards it in a way!
They have developed a lot in the last couple of weeks too which has reassured me that although slower than others might be, it's going in the right driection

@teksab how are other gestures such as waving and clapping? What about responding to name?

Your DD is definitely pointing in the pic, but I do understand how worrying it is - when I was told that DS might never talk / communicate it was awful, but your DD is communicating and has words. As I said before my entirely NT daughter only pointed once as a toddler, my DS didn't have a single word until 3.5 and didn't point until 2.5 neither have autism and there are many kinds of speech and language disorders as well as delays but people jump to autism. I think if you want to know for sure then you might have to wait until she's 2 or 2.5 and then if you're still concerned ask your NHS Paediatrician for a MDA and Ados test.

I recently wrote a blogpost based on a scientific book that summarises all the evidence surrounding autism diagnoses (I have two diagnosed autistic DS). Put simply, 'autism' is diagnosed from a set of largely unrelated behaviours and 'autistic behaviours' can be due to potentially thousands of different neurodevelopmental conditions.

Thus, you likely won't know if your DD is autistic right now (neither of my DS had anything detected even at 2 1/2 year checks) and, even if she is, you're unfortunately going to know very little about what that means for the future.

The thing I would say is that prognoses are usually far better for DCs who don't have GDD (Global Development Delay) or other significant delays at 17 months because, then, the 'autism' is often a sign of probably mild familial traits and not the tip of a massive neurodevelopmental iceberg. The scientific book I read pointed out that 'autism' rarely occurs on its own, DCs usually have speech & language delays or epilepsy or dyspraxia or motor abnormalities, and - obviously - those things probably aren't going to be an big deal if they're quirks shared with your clumsy uncle (or whatever), but they are if they're the consequence of a genetic disease.

Thus, I'd be focusing not on whether DD is pointing (or whatever), but more whether she's meeting milestones in other areas. You probably want to focus on whether she's simply displaying some autistic behaviours, or whether she has lots of delays.

@Londonwriter would you be okay with sharing the blogpost? I’d love to have a read.

When you say development delays what do you mean? Would not pointing be classed as one? She did crawl, talk, walk, use her pincer grasp, wean, sit up etc all within the ‘normal’ ranges. It’s only the pointing that she’s passed the ‘normal’ range for. She claps but doesn’t wave that often either and doesn’t always respond to her name. It’s quite 50/50. In terms of other delays there’s no actual other ‘delays’

@midlandsmummy123 thank you for sharing your experience. I think it’s the fact that she only responds to her name 50/50 and doesn’t wave much either in correlation with the pointing that worries me.

She’s within the ‘normal’ range for all the other milestones. It’s just the things mentioned above that I’m worried about

That's what I meant :) Within the 'normal' range for cognitive milestones, suggesting that she doesn't have Global Development Delay (GDD) or a learning disability.

You must remember that although autism is seen as a social communication disorder, you don't actually need to have difficulties with social communication to get a diagnosis. Having atypical body language, for example, meets the diagnostic criteria, even if it doesn't cause any real-life problems with social communication.

Waiting lists!! Just no she’ll more than Likely be the same as everyone else by the time school comes around. Please just stop! I probaly just don’t understand why you can’t just your baby? W hwy does it even matter at 17 months? Every baby is beautiful and different,

sorry if that doesn’t make sense, but it’s starting to really upsets me that people don’t get that everyone is different!

Just something to note (may already have been but I haven't read every post): autism (as with, say, dyslexia) is a learning difficulty, but not a learning disability. It makes some things harder, particularly social and communication things, but it's unlike a learning disability where no matter how hard someone may try, they're not going to be able to understand beyond a certain level. Autism may come with a learning disability, it may not. There are plenty of us who don't have the learning disability and so accidentally learned to mask because we knew we weren't fitting in, even if we didn't know why. Nowadays, we know why (and so can say bollocks to the masking, which is very freeing).

It's not even that...

People assume social communication difficulties are actually problems with socialising or communicating, but this is misleading. It's literally a technical term for a disability in the act of social communication even if it doesn't cause real-life problems with social communication.

What I've learned from DS5 is that, if you have a sufficiently inclusive school with loads of disabled kids already, young children are remarkably tolerant of a playmate with full-body tics who moves like a rubber windsock, provided he can make it hilariously funny. So, if you've got an extrovert DS who can work out how to make his disability/disabilities magnetically fascinating to classmates, you end up living with a super-popular puppet clown with a medically-accurate autism diagnosis.

It's made me skeptical, let's say, about autism as a concept.

You don't seem to get that everyone is different either ,17 months is very young and nobody can say wether the Op.s child is autistic
If she is nobody can say how it will impact her either
Again it's a MASSIVE spectrum and it's unhelpful to minimise it.

I feel like there’s a lot of minimising on these threads

No, just plain common sense. There’s a reason 17mo’s can’t be diagnosed with autism. Just as there is a reason toddlers can’t be diagnosed with ADHD or every typical toddler would ramp it in for the diagnosis. Obsessively looking for signs is not normal and people who don’t indulge this are not minimising, just pointing out the absurdity of it. I say this as a mum of a child with every ND letter under the sun.

I agree 17 months is far to young for an autism diagnosis
However when it comes to autism threads there is an awful lot of minimising and some people fail to take into account the vastness of the spectrum

However when it comes to autism threads there is an awful lot of minimising and some people fail to take into account the vastness of the spectrum

Fine, but that has absolutely nothing to do with someone obsessing over a 17mo and their future life WITH autism. There’s something very unusual about that that throws up more red flags than a communist army.

It was the health visitor that said the Ops child would likely get a diagnosis though ,which i think is way over stepping the mark and incredibly un professional.