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17 month old Autism? Is this what Health visitor getting at?

7 replies

Picklesjar20 · 08/08/2024 07:05

My LO I love to bits, but has always been hardcore.

Born screaming, never stopped, as she's got older it's turned into meltdowns.
I am still awaiting a first word 😅 she recently has started making expressive sighs, but some days will be completely silent. Only started crawling at 16months, that's as far as we have got.. she will not cue for anything. Won't cry or communicate for anything, at nap time I have to regularly check on her as she won't tell you she is awake, she just sits there in silence waiting for me, leave it too long she will bang on the walls with her feet through the bars. She doesn't play with her toys how other toddlers do either :( I didn't even know babies coo and babble until my newborn who is doing it 😅 she never ever made a sound other then screeching till over a year old :/

I've been so paranoid I have done something wrong :( I have a newborn, and already it is so exponentially different.

Anyway, the health visitor keeps an eye on my LO and regularly meets with her, and stated about referrals at the 2 year review. Is this for my peace of mind? Or is she suspicious?

I do have a faulty gene (CACNA) which is hereditary. Which I discovered through neurology recently. It causes developmental delays, autism and epilepsy, which is looking like she may have :( she was also starved of oxygen in the womb..so honestly considering what the outcome would of been I am just happy to be blessed with her..but I keep thinking it's my fault and I must be doing something wrong as she struggles so much and people out and about keep commenting on it. She also pulls out her hair constantly, mums i meet comment it's a sign of stress, but she doesn't seem stressed and we have a very calm home :( she does it when happy and playing too..

So far the professionals just say a bit behind and all babies different, but given the regular monitoring do you think they think it's something more? Or do they think that I am crap so checking more? 😅

What were signs in your babies? Also I'm panicking it is something else?

I have tried everything, all the advice I am given from various professionals, other mums from groups as well, even when I feel I am just being put down I will still be open to try anything :( I don't want to be rubbish and fail her.

Help :(

OP posts:
RappersNeedChapstick · 08/08/2024 14:36

If you have a faulty gene that you know can cause those issues, I think thank might be what the HV is saying yes Flowers

I think the best advice I can give is to fill in both the:

18 month Ages & Stages

and the 18 month Social & Emotional Ages & Stages

And then ask your HV to score both of those for you.

Normally you'd expect babies to score grey on a couple of areas, if she's scoring grey in more than 2 or in the black in any areas, I would ask the HV to make referrals now, rather than wait.

I'd be asking for Genetic Testing (although this can be a long process)

Assessment for ASD

Portage

A hearing test

And Speech & Language Therapy

RappersNeedChapstick · 08/08/2024 14:46

Sorry should have added that the waiting lists are long. There isn't much point in the HV waiting to refer you as ideally you want to know if she has ASD before applying for school.

Picklesjar20 · 08/08/2024 15:22

RappersNeedChapstick · 08/08/2024 14:36

If you have a faulty gene that you know can cause those issues, I think thank might be what the HV is saying yes Flowers

I think the best advice I can give is to fill in both the:

18 month Ages & Stages

and the 18 month Social & Emotional Ages & Stages

And then ask your HV to score both of those for you.

Normally you'd expect babies to score grey on a couple of areas, if she's scoring grey in more than 2 or in the black in any areas, I would ask the HV to make referrals now, rather than wait.

I'd be asking for Genetic Testing (although this can be a long process)

Assessment for ASD

Portage

A hearing test

And Speech & Language Therapy

I had a look and she is black in 3 areas, grey in the rest 😅 I will look again in a few weeks at 18 months as that is when our next check up is. Thank you so much for this. We have had hearing tests, all fine, eye tests fine. She mentioned about referring to speech and language therapy. Under HV advice she is also starting nursery to start getting a picture together from others who work with children. Never heard of portage..I have Autism (pretty obvs due to the gene) husband has ADHD so feel like she's had everything at her, even a rocky birth:(

OP posts:
RappersNeedChapstick · 08/08/2024 17:47

If the HV has mentioned SLT already I'd definitely ask her to make that referral.

It's also worth reading up on Portage and asking for that referral Flowers

FromWalesAndBackAgain · 08/08/2024 21:43

I think @RappersNeedChapstick has offered some good practical advice ❤️ I just wanted to add you have done nothing wrong, and even if she gets a diagnosis she is still your lovely daughter - kids on the spectrum just experience the world in different but still beautiful ways. If you have autism and your husband has adhd just look where you guys are now ❤️ You sound like a lovely caring mum and that’s what you can control so keep being that and following up on the advise the other poster has given

solomon2 · 09/08/2024 21:14

No advice but just wanted to send you some love xxx

RappersNeedChapstick · 10/08/2024 09:33

solomon2 · 09/08/2024 21:14

No advice but just wanted to send you some love xxx

Sorry I can be a bit too practical sometimes. Obviously this is a lot to take in OP and I wish you the very best too Flowers

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