Failed ALL 12m ASQ - developmental concerns

[WorriedMama2025]

I’ve had concerns with my LO since they were little. It seems nothing comes naturally to them. Like NOTHING. They are developing much differently to my first

12m old and looking at the questionnaire has failed (black) every section!!! Aware it goes up to 12m30d so has another few weeks but I don’t see that miracle happening.

HV is coming tomorrow no doubt I’ll be brushed off again (failed the 9 or 10m ASQ and they said they’d come see us again at 12m)

eyes checked all fine. Hearing checked but was unsuccessful in that LO would not let them put things in ears to test so got to revisit.

I am such a worried mam, is my beautiful baby going to be severely impaired when older :( I just want to help and know everything will be okay

The really good news is that you’re on the HV’s radar now and hopefully she can get some referrals in place

Has she also asked you to fill in the 12 month Social & Emotional Ages & Stages @WorriedMama2025?

You’ll probably get some more support if you post in the SN Sections but I’d say that I would want a referral to a Paediatrician from the HV now so that they can assess why your lovely DS is behind his milestones.

@TinyMouseTheatre - wow, just done it and scored 85 :( way above cutoff….

OK will try this post in the SN section too thank you x

In that case I would definitely want the HV to refer him to a Paediatrician when she sees him.

If she wants to adopt the “wait and see” approach, which they often do, I would ask her what she thinks will improve over the next couple of months given his scores in the two Ages & Stages.

If she does not want to refer at this point I would ask her to make the follow-up appointment with you there and then so that you aren’t waiting to see her again for months.

You could ask her about a referral to Portage and for a referral to an Occupational Therapist, both of these should be useful.

The supportive MNers in the SN section should be able to help you with applying for DLA

@TinyMouseTheatre - yes I don’t think I’ll accept watch and wait from them. I will try to advocate for my baby as much as I can.

ill mention portage and OT. Thanks for your help.

(I did do a thread in the SN section, hoping I get some useful advice) x

So glad you’re up for advocating for your DS. I regret not doing it sooner for my DD and unfortunately didn’t realise how much you do have to push HCPs to get what your DS needs

@TinyMouseTheatre - what level is your DD?
is it just ASD she has? What referrals do you think she’s benefited most from?

(sorry for all the questions, absolutely fine if you don’t feel comfortable answering)

She has AuDHD and ARFID. Pretty sure she has Dyslexia too but she’s not been assessed for that.

The outstanding thing at 12 months though was her lack of communication.

I think your DS needs assesseing for not meeting their ASQs though rather than just whether they have ASD. Otherwise it could be a long time before you get a referral as most areas won’t accept referrals for ASD until they’re over 2.

Forgot to mention in my last post, I’d also ask the HV about groups for SN DC in your area, either groups you can take them to or support groups for you

Oh bless you, I can read your worry and your love for your baby in your posts.

I really hope you get the support of your health visitor tomorrow. Good luck.

@TinyMouseTheatre - sorry I forgot to update. The HV is making referrals to Paed and S&L. Aware it’s a lengthy wait though

It is a lengthy wait but so glad that you’ve got those in place now

Has your HV also done a referral to Portage?

Failing ASQ across the board is scary but it’s a screening, not a diagnosis. Push for proper assessments early, speech, hearing retest, development check. Early help can change a lot, don’t let them brush you off again.

Sorry @WorriedMama2025forgpt to ask if the HV has also referred for a hearing test?

@TinyMouseTheatre - unsure on the portage (will email them as forgot to ask!). Also had a hearing test which was inconclusive because LO wasn’t playing ball :( so they said they need to try again in few months. Eyes checked all ok…

@loryN22 - I know, I just feel a diagnosis is inevitable and am so sad about it. But will do whatever it takes to get my baby the help they need. 💔

Hi @WorriedMama2025 just wondering if you had any update? I hope you and your little one are doing ok?

I’ve also been worried for a while that my baby is delayed across all areas (currently 12 months). We were very lucky to be able to see a paediatrician relatively quickly. She said that my baby was sitting at about 10 months development wise, so 2 months behind, and also has some mild low muscle tone. I just really want to know what this all means for her future. The doctor said that she sees a lot of babies with developmental delays and that nothing was jumping out at her with mine but also that it’s still too early to tell so she’ll need to see us again in 6 months. It just feels so daunting to have to wait another 6 months not knowing anything :/

Six months does seem like long time, you’re right.

Are you in the UK and if so, have you been referred to any services like portage, physiotherapy or a hearing test to rule out Glue Ear?

@TinyMouseTheatre
yes we’ve already been to physio and have been referred for a hearing screen, although I’m pretty sure her hearing is fine. We are UK but she never mentioned portage, I haven’t heard of that before. She said that it was too early for speech and language therapy unless there was feeding issues.

@ThatHappyEagle Sorry I couldn’t be more positive but now @ 16m it’s even more apparent LO is way behind (technically GDD). Awaiting referrals but in the UK so the wait is longgggggg … no words, no gestures, no joint attention, not walking etc.

Hope you get on ok with your LO

@WorriedMama2025 I’m sorry you’re still waiting! I really hope you can get some support very soon.

Try not to worry too much and enjoy your baby in the meantime. It’s really early still and there is time for her to catch up. My daughter scored grey or black in most of the areas in the 12 month questionnaire and also has low muscle tone. She caught up in all areas except gross motor where she is still quite far behind other kids her age but does walk independently. We had lots of tests including MRI and genetic tests but we never got a diagnosis.

Oh bless you. Where are the referrals to?

@2UNDR2 - developmental paed, SLT & portage x

Have you seen any of them yet or have they given you and idea of when you might be seen?

@TinyMouseTheatre Nope none, HV doesn’t know wait times but said they are very long. Believe the developmental paed is 18-24m minimum! Portage is currently closed as only open during term time (but unsure on wait time when it reopens). Unsure on SLT, think similar to paed

am currently looking into private x

That was my next suggestion, to ask if you had the means to go private.

Wishing you and lo all the best 💐

I think it might be worth contacting the Paediatric Service and asking how long the wait times are, check that your LO has actually been referred and say that you are available if they have any cancellations.