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 have two autistic DC and I think 17 months is very early to be pointing to a diagnosis. There doesn't seem anything definitive in what they have observed, although if your DH is likely autistic then there is more of a possibility. However, until your DC is older there is little you can foresee about her future. There is such a range of degrees and types of support that are needed. You don't know how verbal your DC will be. Even if her speech is delayed that might improve. I have taught autistic DC in my primary class and sometimes their level of speech improves dramatically even within a year. I think things will become clearer for you by the age of 3 or 4.

With my own DC both are fully verbal and thr impact has been more on their mental health. One has really struggled with the school environment, one also has OCD. I am hopeful that with a few adjustments they will both be able to lead happy and fulfilling lives.

I'm sure some Health Visitors are great, but lots massively overstep the mark and/or are just incompetent. They probably weren't that good as nurses or midwives, then decided they'd like to spend the rest of their careers sitting on other people's sofas drinking their tea.

Hi OP

I just wanted to share my experience with you so far. My DD6 was diagnosed with ASD at the age of 4. We always had concerns about her but brushed them off as her being timid and shy, an only child, lockdown so not well-socialised etc, once she started nursery it became apparent very quickly that she was not like the other children.

DD is in p2 now (NI) in a mainstream setting. She has a Statement of SEN and a full-time 1:1 classroom assistant. She has been assessed by educational psychology as having moderate learning difficulties and will most likely need a move to specialist education at the end of KS1. She struggles with the work at school but is happy, settled, enjoys the routine and has many wonderful little friends who love to take care of her (although I have been advised by her paediatrician that due to a change in social dynamics around the age of 7/8 that this may not always be the case.)

DD regularly attends SLT and OT to help with her fine motor skills. She sees a dietitian due to her tiny stature and weight and her restricted diet. She is currently under investigations for genetic testing as she has indications of a genetic disorder that is linked to autism and learning difficulties. We have no idea what the future holds in terms of independence as an adult and also potential repercussions of the genetic disorder if she is ultimately diagnosed with it which is something I will always worry about.

Despite all of the above concerns DD is the absolute light of my life. She is sweet, gentle, adorable, funny, quirky, beautiful and perfectly unique. I wouldn’t wish to change one thing about her as she is truly perfect as she is and I’m thankful for her every second of every day.

You sound like a wonderful, caring and supportive mum and your little girl is lucky to have you. Being a SEN mum has its challenges but we all just do our best to support our children with SEN, our reward is seeing our children happy and healthy even if they are not quite like other children.

My advice to you would be to get as much support in place at the earliest opportunity- SLT, OT, PT, dietitian, autism assessment referral, EHCP put in place for starting school etc. The earlier your DD receives support the better it is for all of you, especially her.

You’ve got this OP, keep doing what you’re doing and you and your daughter will flourish 💐

True. I also think since social media where people have developed birthing groups and things like that it is so much easier now to compare children whereas previously this wasn’t really the case.

my DD is now 2 and still showing the behaviours I have listed as well as general development delay. Time will tell I guess.

our HV hasn’t said autism tbf just said it’s likely they’ll want to assess her. I do think the HV saying that is inappropriate because the diagnostic process involves many different people from paediatricians to highly trained SALTherapists.

As a mother to an autistic child who was diagnosed as a toddler, your child also sounds very likely to be autistic. Not talking at all at 19 months and the other things you describe would be very strong grounds to join the waiting list and is far more than the basis of which my DD was diagnosed. I’m astonished that nobody has mentioned autism yet, however don’t wait for nursery staff/doctors to mention it, contact SALT yourself! Or whatever the process is in your area. It takes a very long time anyway so in the meantime if you change your mind you can always stop the process.

It's just so impossible to say.

My amazing 17yo dd has autism, formally diagnosed at 14. She's very sensitive, extremely empathetic, she has found school difficult at times navigating friendships but has found her folk now.
She's just been predicted 3 A* at a level. She leans on me for a lot of emotional support which can be draining at times but she will be just fine in life i am quite sure.
Am glad we got the diagnosis as she is kinder to herself now and has been able to get some accommodations for exams.

And?! My DD began the diagnostic process at 18 months as she was showing very clear signs and she was diagnosed before she turned 5.,

Op, you sound like a brilliant mum who will get DD the most support you possibly can, so straight from the off her life will be better than your DH's who didn't have that.

But on a related note - your DH found you, and you love and accept him, so try to put that fact first when thinking about her long term future.

From experience with ADHD, you do have to be the squeaky wheel and keep nagging and pushing the authorities to get what you're entitled to. It shouldn't be like that, of course, but in general my advice is to make yourself a pain in the arse and they will want to make that pain go away 😂

The autism spectrum is quite vast. At one end you have people who are completely non verbal and at the other you have people who you would never think they're autistic as they're so high functioning. Your dd is very young so I'd hold off on worrying just yet.

My dd was diagnosed when she was 8. She had quite a hard time during primary school, she struggled to make friends, she couldn't keep up academically (she's also dyslexic) and was in speech therapy for a few years. We managed to secure her a place at special secondary school and it was the making of her. Being around other kids who had the same difficulties as she did gave her a sense of belonging.

She made a lot of friends some who she's still friends with now as an adult (she's 22). She managed to get a few GCSEs and she's currently in college doing Joinery. She still struggles in some aspects, but nothing like the way I worried she would. She's very independent and strong willed now.

My son was diagnosed around 2.5 years old. He was deemed to have the cognitive age of 9 months old at this age. We were told he may never speak, or develop socially. But any progress is positive.

Anyway he's nearly 12, and a very typical 11 year old, he still finds some social situations a bit overwhelming so may opt out of going. But on the whole he's caught up. Now if you met him you wouldn't really know.

I'm only saying this as when he was first diagnosed it seemed like a really gloomy outlook for him.

When preparing for tribunal for DS1 we had SALT assessment by someone who was qualified to diagnose and alongside other assessment tools also used DISCO. This is a diagnostic interview of caregivers that interrogates early development from birth. Caregivers often pick up on things before the child is old enough to be assessed in their own right, eg using ADOS.

i’d say both are necessary - history and a snapshot of current functioning.

I’m not sure where HV not qualified to diagnose fits into this but I would follow it up, especially given family history. Early input can mean that your child starts school with their needs understood. And has a better outcome.

I can still remember the head of DS1’s primary school claiming that he was a manipulative liar when he was 7. In truth he was a selectively mute autistic child. He was already anxious so this view fed back to him daily was disastrous. Special school couldn’t undo the damage and as an adult he is now housebound and not able to communicate with the outside world. I am full time carer.

Delay damaged his mental health. This is far more disabling than an accurate diagnosis of autism or even a jumping the gun suggestion of autism could ever have been.

Thank you for all of the insight provided on this thread.

I want to just clarify that it was the Early Years Worker that mentioned that it is likely that my DD would have a diagnosis at some stage. The Early Years Worker did a joint visit with the Health Visitor and it was the EYW that did the actual screening/questionnaire.

I’m not 100% sure what to think as some of it I do think is due to the fact that my DD didn’t know them and she takes an hour or so to warm up to someone as she doesn’t spend a lot of time around other people apart from at nursery 2 days a week. She’s also been going through a period of separation anxiety so not sure if that’s why she didn’t fully warm up to them - but she does give her dolly at home milk (not always as she gets distracted by her other toys sometimes) and she does respond to her name when I call her 65-70% of the time unless she’s preoccupied.

I guess time will tell…

I’m willing to support her in whatever way is needed regardless of whether she has Autism, is ND in any other form or is NT

Neither of them are qualified to say she is likely to end up with a diagnosis of autism,at the most they can say they have some concerns and would like to.refer her to appropriate agencies but it's widely inappropriate to suggest she's going to get a diagnosis especially as she's so young arctic point.

I will be honest with you about my journey and thoughts with an ASD child aged 8 (he was on the path way from 2). Take this with a pinch of salt, as most people's experiences will be different as each person on the spectrum is completely different from one another.

My DS is verbal, but has social difficulties, emotional disregulation and some mild learning difficulties. He goes to mainstream and has a 1:1.

Firstly, he is extremely intelligent around his special interests (now, its the weather). Be prepared for your child talking intensely around this, and actually show an interest in it yourself to improve their self esteem and bond. I am now an expert in the weather myself!

DS struggles socially, particularly social cues, and I have numerous incidences of DS causing upset to another child or himself, due to being unable to read the situation correctly or other children finding him unpredictable. Its important to try and teach social norms at home. Me and DS frequently role play situations at home so he can practice how to make friends or deal with situations that he finds challenging.

Emotional disregulation is a big one, and DS will regularly have meltdowns. I let him feel his emotions. I dont make a fuss. I offer cuddles and support if he wants it. However, usually, he just needs a quiet space somewhere alone and he is over it in 5-10 minutes, once he has had time to think.

Overall, I think my DS leads a relatively normal life. He does have some additional difficulties vs a normal child, but with a bit of extra guidance and support, he seems to get on fine. He has made friends in the street that he plays with, but has really struggled to make school friends.

And what clinical or medical qualifications did the EYW have?

The only people qualified to diagnose autism have multiple degrees and years of medical training

So one aspect that DD didn’t do well in was the pretend play aspect.

Today she gave the dolly milk twice and even gave the dolly her toy broccoli, she also gave the broccoli to the cow in her puzzle and said ‘eat’

Whilst I am weary due to her not pointing and due to the fact that there is a family history of Autism, I’m also a bit skeptical of the screening used as DD just didn’t really want to engage with complete strangers constantly talking at her. When it’s just me and her she’s been doing pretend play and has been bringing toys over to me etc (another thing she didn’t do when they were here).

She's 17 months old, my DD pointed once at 18 months old and was NT. Other than the family history what are you going on? the HV/Early years worker are in no way anywhere near qualified enough to tell you that your child is autistic and I suspect they are over reaching. Autism in young children in the UK is only diagnosed through a rigorous multi disciplinary assessment which do not include a HV nor an early years support worker. There are so many other things that could be going on, I'd ditch the HV and ask your GP for a referral for a hearing test and to the paediatric team but I suspect your GP will tell you to hang on for 6 months.

At 17 months, literally no one can tell you what sort of life she will have. HTH.

This

The HV can't diagnose. Ours said much the same but I had done a lot of research and it didn't fit. Dc was seen by specialists and it was dismissed.

Children develop at different rates. Also there are a lot of other explanations for things. Sometimes people jump to autism because it's the most well known but then overlook other important symptoms.

Has your DD had her hearing tested?

As for the autism, who knows how this would affect her. I have a friend with (now adult) child with autism who is placed in a group home, non verbal, highly distressed, not toilet trained. I have a child with autism who, while on their own ‘train tracks’, has a good degree, good job, good friends (or exactly the same as them), and good life ‘for them’, they are happy. This has involved finding good fits though for schooling through to career path though, not trying to shoehorn them into stuff that won’t fit. Yet, it’s supposedly all ‘autism’ and everyone is the same with three letters, ASD, let they are obviously not.

Thank you for the insight everyone @HoppingPavlova and @midlandsmummy123 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?

Thanks

I would request a hearing test just to rule anything.out like glue, ear

Try not to worry right now. You are doing all the right things for now. Be as proactive as you can and only time will tell the rest.
Autism has an absolutely massive range. Some will never speak, use the toilet independently or have any semblance of a 'normal' life. Others will go to uni, get a degree, a job, get married and have children. There is no way of knowing where your DD will be on that spectrum at the moment, and there is nothing to be gained from trying to imagine the future for her, apart from more worry.

I’ve taken her to the GP when she’s been unwell previously and they’ve looked in her ears for signs of an ear infection. Would this have picked up glue ear?

Probably because it's a build up.of wax but I would still request one when my son was being assessed for autism he had a hearing,test if anything it just rule s things out .