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

Op, your DD sounds exactly like my NT DD did at 17 months. I don't know about the pointing as I don't think I was aware of it as an issue but my DD didn't do imaginative play and she could only speak a few words at 17 months (actually your DD sounds more advanced than mine was!). I'm not saying your DD won't be diagnosed with autism but without the family history I'm not sure they would be indicating this so early.
Either way it sounds like you love her very much and are a great mother so I'm sure she will do very well in life.

Yeah my DD was the same at that age. Grew up with no autism. Had 6 words by the time she was 3 ( I remember that as the HV stressed about it)

@sha160528 please can you tell me more about the hearing test? she had her hearing checked when she was a newborn and passed. Does that count? She does turn when she hears a loud noise or hears singing etc so would that be enough to rule out any hearing issues?

Young kids have notoriously bad Eustachian tubes, it’s a design fault really. They really need to grow into them, but some are more problematic than others. They can get glue ear, which can be pretty much permanent or can come and go to an extent, which is why some kids need grommets to assist. I’d get this aspect assessed as a priority just to see that it’s not impacting. One of mine had pretty permanent glue ear by the time they had it drained and grommets fitted, yet their hearing fluctuated.

ETA - I’d get a paed ENT assessment, as some GP’s are not the best in this area.

@HoppingPavlova do I contact my GP for a referral to a paediatrician? Or do I go through the HV?

How was your child diagnosed? The doctor has routinely checked her ears when she’s had an infection/temp

@FedupofArsenalgamedid your DC respond to their name every single time and did they point?

@Iloveshoes123 thank you for your response. Did your DC always respond to their name? She does speak quite a few words although she’s a bit quieter right now (she’s got a cough so perhaps has a sore throat and she’s teething too) but I’m not really that concerned about her speech. Although she doesn’t speak a lot in front of professionals

Nope. Certainly not at 18 months. Maybe by 3

I know someone with a child who's hv picked it up very young. The mum had no idea, even though the brother was being assessed.
They had hearing test early on in the process.

I haven’t read through the full thread but those issue could be explained by hearing. Has she been refered to audiology for a hearing test?

A health visitor isn't in anyway qualified to.say a child will.receive a diagnosis at some point
yes they can voice their c concerns and refer to appropriate services but that all.

Yes, and she did. And she was right.

Autism is a massive spectrum. Some cope with regular school, socialising, working, travelling, living alone. Some don’t at all and need care. Until you see how it affects her as an older child and adult it’s impossible to say.

@x2boys I think perhaps she did overstep in terms of being under qualified to say that. She also couldn’t answer a lot of the questions I had in regards to next steps and what the interventions would entail.

@Mynewnameis my daughter’s actual HV did not even have any concerns from her visits. She m thought it DD was where she should be - it was me that raised concerns in regards to pointing and my DH’s history. That’s when she referred me to the EYW and they did a joint visit

@Dreichweather nope. They didn’t even suggest a hearing test to be honest. Maybe because she does speak words?

But that doesn't mean this health visitor will.be right ,
It's not in their remit to.diagnose autism ,that's why it needs an accurate assessment from those trained to do one.

I’ve just finished Pierre Novelli’s (a comedian) book on Autism “why can’t I just enjoy things?” Highly recommend for partners/parents of those with ASD

Does she go to nursery?

We aren’t officially trained but we have seen plenty of early autism traits and usually the children know the staff they are with daily that they behave more naturally with us for us. We then refer on to professionals who can actually do something to help access official channels.

Personally the description you’ve given wouldn’t make me overly concerned, there is a lot of variation in being able to do those activities when asked to at 17mths.

Things I’ve picked up in very young ones are stimming - we had a little one who would rotate his hands and feet when excited, for example. Not responding to being talked to. Finding it difficult to self soothe or sleeping issues, excessive climbing (most toddlers climb a bit but I’ve found these children like climbing on things others wouldn’t think to climb), tipping out boxes but not to play with the items.

I’d say I can pick out children most likely to be ND by 2/2.5yr through experience of both ND and NT children and I’d imagine most experienced nursery staff would be the same.

She can speak words and still have hearing issues. My child had very good speach for her age but had glue ear. One in five pre schools will have glue ear at any one time. Glue ear is the most common hearing issue among children but there are others.

Go to the GP and ask for a referal to audiology. An autism diagnosis happens when certain behaviours are present and there isn’t another explaination.

please set aside this for now and enjoy your child. My eldest is autistic, diagnosed at 2.5 years and there were signs from birth, no babbling, no eye contact, dislike of looking at me even, low tone … dd2 was on the same track but at 2.5 took a turn and doesn’t have autism, she is dyslexic though

@Bryonyberries when I spoke to the key worker she said she had no concerns to be honest.

I asked her if DD responds to her name at nursery. She said she wasn’t sure - she said she’d test her and find out.

The next time I spoke to her she told me that she tested DD a few times and she responded every single time (not always the case with myself - she doesn’t respond every single time but then again her key worker has a very high pitched, loud, screachy voice) she said they didn’t actually have any concerns. I did ask about pointing - she said she hasn’t seen her point either, I did find it a little strange that considering DD has attended since September - the key worker didn’t know if DD responds to her name.

@Dreichweather thank you. Will look into this tomorrow

Just thought I’d provide a quick update…

I spoke to my DD’s key worker today to ask for an update as to why she’s getting on at nursery.

Her key worker said that DD always responds to her name at nursery, engages well with other children, is constantly talking, claps, brings toys over, does a lot of pretend play and makes good eye contact. The only thing she doesn’t do is point.

I asked how she was developmentally compared to other kids.

She said that initially she was a little bit behind when she first started nursery, but then she caught up and apart from the pointing there’s nothing else she seems majorly delayed in.

For the HV DD didn’t engage in pretend play, didn’t respond to her name, didn’t show and bring toys over etc. The key worker did say it could be as they’re strangers to her she didn’t feel as confident around them.

I did relay the above back to the HV who said that they did say that it could just be a delay (if I’m honest I feel like the HV thought it’s more of a delay whereas the EYW was leaning more so towards Autism imo). The EYW did also say it could just be a delay but she did say the words ‘is likely to receive an Autism diagnosis’

Mightjust have to wait and see

Pls do also see GP for referal to audiology. My DD’s key worker thought her hearing was fine but you know your child better.

Just another little update (as I know someone who’s in a similar situation may try and search for answers just like I did) … DD is engaging in a lot of pretend play. Regularly brings toys over to me.

She has been doing an open hand point when she wants something.

She also did this (see attachment) in a selfie of us both so I’m not sure if she’s just sticking her index finger out with no intention to point or if she’s slowly developing the skill?

As for the responding to her name it’s a bit of a tricky one as she’ll respond when she knows she’s in trouble and if she’s not preoccupied however, if Miss Rachel is on or if she’s very occupied with her toys she won’t respond - so not sure what to think there…

I’m aware that there’s a possibility she might be Autistic but also I don’t want to have a premature diagnosis where it could be that she’s just a little delayed in the pointing aspect.