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 understand your fears btw.
But this is not constructive.
My DD is under assessment for ASD, has been since she was 7, she's 11 now and still not diagnosed. So you could be wondering about this for a long time if your DD is similar.
But she is her own self, we love her, and if we'd had the knowledge we have now earlier, it would have changed nothing.

Thank you for this!

Our HV has sent over a promoted diary type thing to fill out over the next year, so I have been noting down anything that falls into the list of ‘signs’ she has sent over.

Im glad the GP and HV have been pretty hot I this and are supporting, it’s just this unknown period that is such a struggle. I half wish the HV had never sent this list!

I’m sorry if the post offended you

But thankfully I’ve had lots of really helpful replies, book recommendations and more info on how the process for diagnosis in early years is carried out

There's a diagnostic tool for toddlers called mchatr. That might help

She is ahead on all her milestones at the moment, except walking (she cruises) has 5 words, is generally ‘chatty’ even if it makes no sense.

Eye contact is an issue, and she had issues with her hearing for the first 6 months (but the doctors weren’t sure if it was laziness)

My biggest fear is a ‘regression’ as I’ve seen lots online about children meeting all their milestones and then one day just regressing, I’ve seen many heartbreaking videos of babies happily clapping and giggling then nothing - going on to then get diagnosed with ASD.

Word of warning we filled this out aged 3 and were told
he didn’t meet criteria for assessment. By aged 4 he definitely did via other sources! So it can change.
do you mind saying what kind of needs your brother has? Do you think any of it could have been prevented?

also how does it affect your husband?

books:
Autism in childhood luke beardon
Avoiding anxiety in autistic children dr luke beardon
the explosive child
your child is not broken

The m chat chart is pretty good at indicating if you should worry about autism. My son has high functioning autism and when I used this he always came out at risk for autism. Where you are now the wondering the not knowing I absolutely found this the hardest part of the whole process.

I’m sorry this week has been so tough, for both of you! And I hope your son is recovering well from the head injury

This is really reassuring, thank you for sharing

Your son sounds like a pretty great young man! Makes me happy to hear how he was able to manage in mainstream school as well.

This is not true across the whole of the UK, if that's where you are located.

My DC was referred onto the pathway within a London borough at 1 year and 6 months, and diagnosed at 2 years and 3 months.

Now at a school where 70% of pupils have an ASD diagnosis and is thriving.

Can I ask what the signs were at this point? I’m not doubting you at all, it’s just that really is the earliest I’ve read about.

Thank you for not only commenting but taking the time to be so informative. I really appreciate it.

Yes the regression videos and stories have been really prominent for me online now (obviously because I’m sending all kinds of signals that I’m interested in that kind of content!) as she is hitting all her milestones but those accounts have even made me start to doubt that her progressing fine is a positive, as I’m now worried it will all just stop one day.

The replies on here have really given me a bit more strength to step away from the content around autism - and I am so thankful for that

I was not aware of that thank you for highlighting. I'm in Belfast where its 2yrs 9mths and the waiting list is years long, my son is now 4yrs 1mth and still awaiting assessment but thankfully everything that needs to be in place for him is in place so I'm relaxed to wait for the official diagnosis. OP it's worth checking the referral age in your area and from your previous reply to me it sounds like your HV is on the ball so if it appears necessary push to ensure the referral is done on the date your child becomes eligible as the wait list could be long in your area too

Ah it’s videos that people took of their babies documenting the ‘signs’ before getting a formal diagnosis when a bit older (most seem to be about 3 at the end of the videos)

Thank you for this, and yes it’s a weirdly lonely experience, although DH is ‘high functioning’ (although I understand from reading online many don’t like this term but I can’t think of an alternate atm) he is quite naturally ‘selfish’ in terms of his needs, my brother is the same but far worse. My parents spent his entire childhood fixated on making accommodations for his needs which quite often negatively impacted me during that time.

I think the fear of DD being in any way impacted has just brought up so much I had forced down from childhood and amplified that fear.

I spent my entire childhood almost as the least important person in the house, and selfishly I’m worried that the same will happen again if DD also has ASD. I know that probably makes me sound like such a bad person, but it worries me.

This is a dodgy game though as if you filmed virtually any baby at the right/wrong moment they would look autistic - because a lot of NT babies head bang, have tantrums, enjoy obscure items like keys and zips, and hate startling noises etc.

DD is nearly 5 and completely neurotypical in every way, no traits whatsoever. As a baby she:

1. Disliked eye contact, this was even remarked on by visitors
2. Was ‘high needs’ - screamed relentlessly and didn’t sleep for the first 6 months
3. Loved strange items like keys, lanyards, labels on toys, and preferred them to her actual toys
4. Made odd movements with her hands and stared at them
5. Was quite late to wave/point, certainly after her 1st birthday - it felt like all the other babies we knew did this by about 10 months
6. Hated certain sounds such as her rainmaker, it literally had her shaking with fright
7. Didn’t really care for physical contact, even as a newborn she would pull her hand away if you tried to put your finger in it

If she had gone on to be autistic no doubt I would be looking back and saying ‘all the signs were there’ as that’s 7 ‘signs’ that I can remember, there were probably others.

I do worry a bit more, but that’s mainly down to how he is handling or processing the diagnosis. I’m worried about how it’s impacted him and his self esteem.

Thank you for the recommendations, we already have the explosive child (before DD we did go down the adoption approval process and it was in our local authorities reading list!) but will definitely look into the others.

Have a look at emdr therapy for yourself to process what your childhood experience was, as as you say above you shoved down a lot of things that impacted you. It's clear from your posts how much you care for your daughter, but to be the best mum and woman in your own right, have a look at the therapy. It sounds like you saw something, it was a massive trigger for you and you've spiralled ever since. You deserve to be free of all of the previous trauma and get to enjoy all the new normal worries of parenthood 😂 x

Thank you, I will definitely look into it as from reading these replies it’s sunk in that it will probably help overall, even more so tbh if she is diagnosed in the future

@GoodnightAdeline at age 1 they were not really rolling about much and didn't respond to name. Would try and drag themselves across the room on tummy, didn't point or engage with anyone, though gurgled a bit and babbled. Was an introverted and quiet baby, didn't seem to experience pain or hunger as never cried, although ate when you fed them.

Initially we thought they might be deaf, and so started a series of investigations with ENT, audiologist, physiotherapist, occupational therapist, speech and language therapist and paediatrician.

DC was diagnosed with glue ear at one point, then they said it cleared by itself, so I'm not really sure if that actually happened. I understand glue ear is attributed to a lot of DC with autism.

Between the time we started looking into it and this diagnosis, it became more obvious, but it was still a surprise when it did come. DC by then was stimming, sitting up but not walking, starting to engage with objects, and fascinated by light and anything which stimulated them from a sensory perspective (fur, bubbles, water etc).

I used to call the paediatrician office every week from about DC aged about 2 to see if they were ready to have the MDT meeting. Reports received from all the services although discharged from audiology as no issues. DC diagnosis came just before the pandemic, in January 2020. I hear the pathway for assessment is much much slower now.

As I said, DC has come a long way since diagnosis. I'd have loved for DC to go to mainstream school, but even the SEN units within mainstream school that I saw would have been too much. By all means it's not the life we thought DC would have, but autism these days is really not a death sentence either.

I can see why you are worried, given your experience. However, right now, the only evidence you have is that your daughter moves her fingers in a certain way. It's not any clear evidence.
Both my daughters are autistic. There's no need to be terrified.

My son had hand twitching, he’s now 13 and has no signs of autism (and displays no symptoms to indicate he would be). Don’t worry. Enjoy your time now and then if you need to go down that route at a later date then so be it.. it is very different now to when your brother was younger, more awareness in schools etc

On a side note I regret looking into this mchat mentioned in a few comments as it’s coming back high risk 😩

I've watched a family member be completely changed after having it, it's really something watching the change in them.

It sounds more like the uncontrollable fear of your child maybe not having the life you thought she would, the why/autism may be a secondary issue. I also wouldn't rule out your husbands diagnosis triggering you more than you realised, you just powering through that and then seeing a flicker in your daughter and it all exploding to the surface.... Something to consider x