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

I think that's a really unprofessional thing for the EYW to say, actually. Especially if your DD hasn't had a recent hearing test. And especially because most of what your describe isn't technically delayed until after 18 months at the earliest.

There isn't an assessment at less than 18 months that can point to a diagnosis either way. A child diagnosed at that age would be by a multidisciplinary assessment and several different observations and histories, from different professionals.The most the assessment would have shown is that your DD is showing some signs that can be indicative of ASD and that she should be referred onto whatever the pathway is in your area. The EYW isn't actually qualified to say anything more than that.

@Anon501178 Thank you very much. That means a lot to me. I also take comfort in the fact that both the HV and EYW commented on the fact that DD kept coming over to me for a cuddle and kept smiling towards me etc which in their words ‘shows the beautiful bond you both have as she adores you’ which is really comforting as I always want her to feel like that with me.

I think you’ve so hit the nail on the head about the anxiety I have for the future and the what ifs. I guess you’re right that she is still young and there is more support available than we’ve ever had before so hopefully she will receive the help. Whether she’s Autistic or just a bit delayed - the interventions will help regardless

Thank you for the kind words

What’s your family like though?

Autism is very often hereditary. I’d say an autistic father on one side and an autistic aunty on the other means those characteristics are more likely to raise concern for OP’s child than a child with no known family history.

Given that HV CANNOT diagnose autism, they've jumped the gun to put it mildly and the most they should be doing is sugesting referal for assessment at a future date/
I absolutely agree that there can be signs very early on... I was pretty sure when my DS2 was only 6m and people thought I was nuts... I was correct, but children vary massively in development and things that looks worrying at 18m can disappear in another 6 months.

I've worked with autistic children for 20 years now and the only thing I know for sure, is that you can't predict. We have kids in nursery and early years that are non verbal , spinning and flapping in a corner with no connection to anyone, who go on to do brilliantly. Others don't. Some will need life long care, others will go on to lead pretty typical lives.

My DS2 was non verbal til he was 5, and unintelligible til he was about 9. Learning difficulties, OCD, physical problems. Special schooled, no GCSEs or anything.
In his 20s now.. after special school MENCAP helped him get some work experience, on the back of that ASDA gave him a few hours...and he's been there ever since, now full time, and earning more than I do!
He's still autistic... he'll always need support, will never live independently, marry or drive. But he has one good friend (also disabled) he has a family who love him, customers who love him because due to his autism he performs his job perfectly and exactly. He knows his customers, remembers everything about them...he still can't shave himself or make a sandwich, but he's amazing.

We could never have predicted that!

Ouch, so I had my GP, a specialist Dr in Autism, a deputy head of an Autism school, an NHS Paediatric registrar and two speech therapists tell me that my 2 year old DS had autism - he did not have autism, his MDA diagnosis at 3.5 was S&L delay, there are many types of speech and communication delays/disorders but everyone jumps to autism, that said as you have the family history it may be more likely - so what's your main concerns, is it communication and social skills? your LEA should have a local offering in terms of groups / support.

Also once your GP refers to the Paediatric team you don't have to see the HV - that was important to me because it felt like the HV was just going to rock up with yet another standard test which DS would fail.

Your hv isn't very professional if she told you your dd will likely be diagnosed with autism.

When asked to give the dolly milk or brush her hair she didn’t do it, she just walked around with the brush in her hand - when we play together she’ll give the dolly milk when I tell her to

Is that really the test? Interacting with strangers over a toy she's not that interested in? Is this really a medically backed test for autism? It sounds highly unscientific. Also feels a bit sexist, why would a 1.5 yo girl be interested in giving milk and brushing hair? What's the test for boys?
I never cared much for dolls and babies - when I was about 4-5 my Barbie went swimming and horse riding, fun stuff!

Yes and no. They can and do show some signs at a young age, however lots of the behaviours you have just listed are not uncommon for NT 18 month olds either so it would be very difficult to definitively say at 17 months. Many 18 month olds have no speech, and put everything in their mouths and are difficult to engage with, for example. Children who are diagnosed the youngest tend to be children with signs of more obvious developmental delays, but it doesn’t seem like OPs child has missed major developmental milestones as yet? I’m not saying she’s not autistic, just that a lot of the potential signs of autism at this age are also behaviours you might see in neurodevelopmental peers at this age.

My child displayed signed of being ND pretty much from birth, and was diagnosed before 2, however his needs are very profound. This is quite unusual though.

@Agapornisif I’m completely honest I do feel as though a test with strangers present around you closely watching you (I feel like DD could sense it as she kept coming over to me for hugs and reassurance) isn’t the best way to go about things as even NT children can shy away or not show off all their skills in front of strangers.

When I mentioned this to the EYW she said that when she’s don’t the questionnaire on children that have shown neurotypical answers, they’ll usually give the baby milk without second thought… it’ll just be natural to them … same with responding to her name.

Sometimes I feel like when DD can sense I’m testing her (for example with the name calling) she does ignore me and sort of smiles. But then when I say her name when she’s doing something wrong or when she’s not up to much she’ll look at me.

Again, HV said if she was to score NT she’d have still turned around despite playing or being busy to show a response to her name being called.

The brushing of the dolly’s hair … we’ve not really practiced at all as I don’t really do that with DD as the baby doll DD has, has no hair so not sure if it’s accurate but given the family history and the fact she doesn’t point I guess I’m preparing myself for an autism diagnosis

There is much more support out there than there used to be. I went for a diagnosis 10 years ago and was told I was hard to diagnose so they didn't diagnose me. I've now worked out I probably have ADHD and ASD. I will be seeking a new diagnosis.

I have had very senior roles and long lasting friendships and I'm very happily married in my 50s. It hasn't been easy but I love my amazing and weird brain.

But I also didn't grow up in a nurturing and cherishing family. This is so much more important for good outcomes. As long as she is secure in your support, she will delight and amaze you and have a great life.

It's OK to mourn the child she isn't but who you anticipated she would be. And I'm sure once you have had support for your feelings, you will be able to enjoy your wonderful daughter as she is and as she will become.

I think you're cutting the cart before the horse, she may have autism like her Dad, the issues that you describe are typical from her age.

She may or may not have autism but I don’t think the reasons you have written suggest she has autism. My 21 month old would not give the dolly milk or brush the dolly’s hair. He also follows instructions/ says things a lot more around me than he would with strangers. A lot of these are typical behaviours.

@Agapornis The "test" here is whether children will join in with a pretend play scenario, and dolls are usually used for both boys and girls. (There's a question on the ASQ that HVs use for developmental checks about whether your child feeds, puts to bed, rocks a doll or stuffed toy.)

Pretending to make a drink or share blocks as "food" would work too, as would putting a driver in a truck and then pushing it around saying "brum Brum".

Autistic children often -though not always -develop pretend play later than typical children, or sometimes not at all. Typically developing children will generally show some pretend play by 18 months.

Children with comprehension delay don't show pretend play at 18 months, doesn't mean that they have autism.

@FlowerUser what a lovely post

Thank you

@floweruser That is such a lovely post and I am so sorry you didn't grow up in a nurturing environment. I'm really glad you're in a happy marriage now.

I can tell you my experience with my son, which is that he’s been able to make friends at school and is in mainstream primary school with a little extra support (taught in smaller groups, some extra maths and reading support given). He has occasional meltdowns which can be difficult to deal with, he is very emotional during them and can run off or hit me and his sister/throw things around the house. There has been no extra support given to me as a parent to help him, other than the slight extra help he gets at school with his school work. But this is just my experience with one child, I know from other parents with autistic children that their experience can be very different, especially if they have non-verbal children. Recommend you get some recent books from the library on autism if you want to find out more, or join some Facebook groups for parents of autistic children.

I have ADHD and was properly diagnosed. I was told by a health visitor that most likely my child will have it as she’s was the most hyper toddler. She’s 17 and I had her tested twice and she’s not neurodivergent. She was just a super active kid.
My husband’s eyes are quite close together and he hates it. He was so upset when HV told him that his daughter will have her eyes too close together too. Well, that didn’t happen either.
But even if it did, ADHD didn’t held me back and neither my husband’s eyes held him back. I worked in an industry full of autistic and neurodivergent people. We all lead very normal lives and our lives would have been way easier if the world was a bit less black and white created by neurotypical people.

What a gift to be told your daughter could be on the autism pathway before she is even in preschool. I first suspected autism when my son was 15 months old. His diagnosis eventually landed just a few weeks shy of his 18th birthday. How different things would have been for him if we had been better able to support him, and know how to communicate with him. We’re struggling atm but I have no doubt that after some time getting to re-know himself he will flourish and thrive because even if he can’t see them, I can see his talents and his gifts.

I’ve successfully coached hundreds of AU-DD women through a skills programme to transition into new areas of work and worked with many ND women in the tech sector. Complex, brilliant women with so many gifts and talents - and full lives. I’ve been diagnosed late in life and it is like all the jigsaw pieces fitting in place. The entrepreneurial space is also full of founders and innovators running fantastic businesses - and a lot of us are autistic / ADD women.

Absolutely your girl will live a normal and fulfilling life. She’ll find her people and with your help she’ll find her gifts and understand what she needs to keep life on an even keel. As you know from life with your husband, autism often comes with comorbidities - and IME it’s these that are the barriers to a life that feels full… poor executive function, sensory issues, rejection sensitivity, anxiety. But you have a lot of time ahead of you to figure this out and will be well armed to make sure school meets her needs.

Hmm. HVs are NOT qualified to diagnose autism and certainly not through a 30 mins observation. There’s an enormous range of normal behavior at 17 months, your daughter is a baby FFS.

First step is to make a complaint against the HV and ensure you never have to deal with her ill informed nonesense again.

secondly - on the off chance this woman guessed correctly (because truly, it’s a guess) Yes your daughter can have a wonderful life. I’m autistic, I make a big mumsnet salary, have a partner, kids, tons of friends,

DD10 is autistic too and doing really well so far. Bright with many friends

we both have our struggles but so do the neurotypicals

But please do make a complaint about this HV.

The health visitor shouldn't have told you ,your daughter would likely get an autism diagnosis ,she can only refer her concerns ,she certainly isn't qualified to give a diagnosis ,and 17 months is very young
As for a normal life ,well it's a huge spectrum and nobody on here can tell you how autism ( if your daughter is autistic) will manifest itself
Many people have struggles, but are able to live and independent life ,work ,have relationship,s
But on the other hand there are people with a diagnosis that need 24\7 care for the for their entire lives
And everything in between ,i
If you have met one person with autism you have met one person with autism.

Sorry but you just don't know that it's spectrum
Yes her daughter may well have a great and fulfilling life
But minimising how autism can impact people helps no.one.

autism is a huge spectrum. some have a full and independent life, and some need lifelong 1:1 care. Many fall somewhere in between. I have 2 with ASD. Time will tell. nobody will be able to tell you that at 17 months. I found it hard living with this uncertainty through the early years but you will be able to let that go at some point and just go with the flow.