Autistic traits - getting through to health visitor

[Amber2802]

Hello everyone,

just seeing if anyone has any thoughts or similar experience. My son was 2 in Feb, had his two year check a couple weeks after. I addressed my concerns about autism and was shot down and told I have given him an easy life. We have another appointment soon to see if he’s made much progress in certain areas but he hasn’t despite trying every day!

I have a long list of “quirks” not necessarily autistic traits to mention but I just don’t feel I will be listened too.

Has anyone had any other experiences? I’m cautious a referral is at least a six month wait hence asking to be referred to CDC in feb.

thank you x

...shot down and told I have given him an easy life.

For that remark alone, I'd strongly suggest that you see a different health visitor next time.

What are you actually worried about?

So his development is behind where it should be? I am assuming that with the pandemic that a lot of kids will be further behind the "standard" development markers for things. Is he talking and walking and following simple one item instructions like get the ball?

HV's have no specialist knowledge of child development and concerns should always be raised with a GP at the very least. You can ask for a referral to a developmental paediatrician to discuss concerns.
FWIW the paed who saw my son after HV called me neurotic and GP described me as over anxious said at first sight of ds at 2 years 4 months " so your GP thinks this is normal? I worry just how bad it's got to be before they refer on. (speech therapist referred ds) I agree with you, your son shows every sign of classic autism"

This might be true for primary school kids, but a 2yr old doesn't actually need much social input apart from their primary carers. So unlikely lockdown would have made much difference to development. Shyer and clingier, maybe, but you wouldn't expect an impact on things like motor skills, joint attention etc, which is what the 2yr checks cover (among other things)

Why waste time with a health visitor just ask your GP to refer.

in my area the paediatricians only take the referral via the HV team. Which is ridiculous because I spent all of 2020 calling them and being fobbed off but my GP was and did refer straight away just for it to be refused and told it had to come via the HV team (my son is now being assessed for autism)

OP my advice is to keep pushing the HV. All the waiting lists and resources are massively backlogged and stressed right now but your concerns should be listened too. I found it helpful to video some of the quirks / behaviours so that the HV can see them even if yeh child doesnt do it at the appointment. We had to wait until 2.5 before they begrudgingly referred our son.

He has been late to all milestones, has been referred to speech therapy as per the last visit with health visitor. Flapping hands, tip toe walking, extremely limited diet (eats the same thing everyday), sensitive to loud noises, won’t sit still. Can’t speak, can’t point. Just to name a few. I have always said a lot of these can just be “toddler things”. But when everyday has to be the exact same, and something inside me just knows I can’t fully support what he needs as I just don’t understand enough as the usual methods of communication/ learning doesn’t seem to stick.

Thank you - I really appreciate your kind words. We are the same, tried to go down the doctor route (who agreed with me!!) but CDC only takes referrals from HV. Thank you for taking the time to share your experience.

OP have a look at PECS (picture exchange communication system) your little one sounds very much how much Ds was at 2. He’s was non verbal until 3 and now has some words / language but he mostly uses PECS to communicate

@Oizys thanks I’ll take a look!

was shot down and told I have given him an easy life.

What did they even mean by that comment? He's had an easy life (he's 2!) so he hasn't met milestones? It doesn't even make sense.

Also what area are you in? You might find there are some local support groups who can help you in the mean time. My son attends a specialist Sen nursery run by a charity now which has been amazing for him and me. It can be such a lonely struggle when you’re in the position so having adults n that understand what you’re going through (the staff and other parents) has been a life saver for me

Does your SALT team have drop-in session or a helpline to ring? We have an autism assessment referral through SALT and I contacted them through a drop-in session (via phone due to covid). Waiting lists here are insane, we've been told we will easily have to wait a year. Also nursery advised getting a hearing & sight test done just to ensure nothing like that is amiss - we got those referrals via the GP. Good luck!

West Sussex. I haven’t been able to find much local to me, that’s why I’ve tried here as I have to admit I’m feel quite low and struggling as it’s hard to speak to family who don’t quite get the struggle.

Haven’t heard from SALT team as of yet. Expecting a long wait 😞

Ah but in my area you don't need a referral to ring the helpline or attend a drop in session - the waiting list is 18 weeks but they put through the referral immediately when I called for advice during the drop in session. Have a look online and see if they do anything like that as they were super helpful for us even though technically we are still waiting to be seen by them!

What a ridiculous comment from your HV.
I would see another or go to GP.
Is your son in nursery op?
I ask as my son had exactly the same flags as your son, a year on in nursery a lot of not most of these have disappeared.
Whilst we are still on the pathway for a diagnosis due to his stimming everything else has progressed.

OP maybe look at this. Not sure how close it is to you but it shares a very similar name to the people that have supported ms Ds and I (although different charities)

www.autismlinks.co.uk/support-groups/group-support-south-east/springboardproject?region=South%20East

I knew when my child was 2 but no one saw it. All through primary school I raised issues and was told no one saw it. At 12 my child was finally diagnosed as autistic. I’d have preferred we’d known for sure at 2 but we just lived in a way that suited us all. They were advanced in many aspects of development including speech and walking, sitting etc.

keep asking but be prepared to wait

@Oizys It's really worrying to me that HV's are gatekeepers to referrals to CDC considering their lack of specialist knowledge. FWIW I changed GP and refused a HV for dd who was referred to ds's paed at 13 month and diagnosed with autism the week of her second birthday.

I'm in West Sussex and our CDC does accept referrals from the gp however I know different CDC's in the same county will have different rules, it's frustrating. Also the GP's referral often isn't comprehensive enough and gets rejected. I expect that the HV knows that they have to do a follow up appointment before referring as otherwise it will be be rejected. Awful what she said to you though.

Have you looked at Aspens? Also reaching families, their Facebook group is amazing and I think it'll be a lot of help to you.

Flapping hands, tip toe walking, extremely limited diet (eats the same thing everyday), sensitive to loud noises, won’t sit still.

Textbook autism. See a different HV if possible and don't be fobbed off. Your son deserves to be heard and you're his, advocate. School will be a lot easier for him when it comes. Good luck xxx

I'm my experience a health visitor can do nothing and even if they can they generally won't.

You need to go to doctor. Be warned though a child needs to be atleast 2 years behind and quite severe to be diagnosed before school age.
It's a long old path that you must keep fighting once on.

HV's have no specialist knowledge of child development and concerns should always be raised with a GP at the very least

Don't be ridiculous. HV's whole job is working with U5s.
GPs are just that - General Practitioners. Some might have a particular interest or recent experience, but as a whole group, many GPs do not.

Now, it sounds like the OP has met with a rogue one, but you can't pretend that means HV have no specialist knowledge

(and no, I'm not a HV)