HV telling me DS is autistic - GP/preschool say no...

[LongTailedTit]

Not sure where to post this, but hoping for some balanced advice please!

I have a new HV who's come twice since DS2 was born (now 7wo), and is convinced that 3yo DS1 is autistic. She really really went on about it at the first appointment, and brought a sheaf of information for me at the second.
Now - I suspect DS1 may have some issues, and it's been brought up as a possibility a few times before by relatives and by me, but she seems to be leaping to conclusions, and it's pissed me off. Eg - she went on about how he needs firm routine etc even after I said he doesn't seem to need routine and is pretty flexible. She wants me to start treating him as if he's diagnosed right now, and I'm note sure that's going to help?

How helpful is it to 'label' a child at this age? He just turned 3 last month.
Having spoken to our GP, she said that as his symptoms are mild, we should wait until he starts school and only seek a diagnosis if his toddler behaviour isn't resolved or it affects his learning. She thinks his behaviour falls within normal parameters, if on the far end.
His keyworker at preschool (v v lovely and aware) really doesn't think he has ASD at all.

Having done a couple of online 'tests' I've found on here, he has scored as high risk and medium risk of ASD, ie "See your GP immediately".
However - like I say, GP doesn't think there's any immediate cause for concern, and those that know him well have mixed opinions.

To be brief(ish!), the issues that cause concern are:
Physically, he's a bit behind - can't really run, walks and fast walks in a babyish fashion. Can't jump/hop.
Doesn't feed himself mostly, can use a spoon a bit. Dislikes touching food. (Has v small appetite, so I do feed him just to get the food in.)
Quite violent towards other toddlers - often lashes out and screams if they come too close. Used to bite a lot - this has improved as he's got more verbal.
Only tolerates 'known' children, but is starting to play with those he knows.
Hurts me a lot, kicking/pinching/hitting etc, daily.
Used to headbutt a lot deliberately in tantrums.
Also used to have v severe tantrums when he'd lose control (glazed eyes) where he'd thrash and be unsafe. Now we only get those at night if he has night terrors - can take an hour or so to wake him out of it.

Any thoughts very much appreciated!

Meant to add - he's very verbal, great vocabulary, amazing recall for dinosaurs etc, seems to have a photographic memory (as did I as a child).
He seems advanced in some areas, but largely is 'young' for his age.

Well I think your HV has crossed the line she is not remotely qualified to diagnose ASD. However I also think you GP is wrong to dismiss you and go for the wait and see approach. Waiting until your child is in school will not be helpful IF he does have asd.

Incidentally your GP isn't qualified to diagnose or dismiss asd so if I were in your position I would go back and insist on a referral to a developmental paediatrician. Ask you HV to provide a written report of her concerns but make it clear you don't feel her "advice" is appropriate at this time.

It seems to me that there are 2 issues here...

1. Your new HV, having met your DS once, is diagnosing a condition. That is inappropriate, I feel. (unless, s/he has done significant further study and work with this condition)

Even professionals who work in ASD would adopt a careful observation and standardised assessment approach.

1. From what you've described, it would seem that, yes, there are sufficient grounds for you to have concerns and that does need to be addressed.

I'd disagree with the GP (and agree with itiswhatitis)and I would push for a comprehensive assessment.

agree with PP, I would want a referral to a developmental paed as well.

If he has asd, then I would want it dx before it he starts school.

Thank you all for your replies!! Sorry to dash off straight after posting!

I spoke to his keyworker and the manager at preschool when I picked him up today, and they've offered to get someone in to assess him, as they've done this previously for another child.
They're getting the paperwork ready for Monday so I'll ask more about it then, as not sure who this would be and if it would be a dx or not.
If this turns out not to be helpful (ie inconclusive) then I'll push the GP for a referral.

Not sure how to deal with the HV, kind of glad on the one hand that she's pushed me into action, but still not happy with her approach.

Have had a chat with my DSis too, and from discussing it with her I realised how DSs behaviour limits us - I have to helicopter him in case other children get hurt, so often choose not to go places/join friends if I can't cope (more so now DS2 means I have no hands free).

Got to go again, thank you all again!

None of those people in your Title are qualified to make a judgement as to whether or not your child has autism.

AND: My ds has a diagnosis of autism and hasn't had a routine in his life, let along a firm one and thrives on surprise novel events mostly which prevent him from become stuck in behaviour patterns that are inflexible.

What is happening at Pre-school will not be a diagnosis, it will probably just be a specialist from the LA who can say whether they feel there are "grounds for concern" or not.

In your situation I would go back to the GP, ask/demand a referral to a paediatrician. The actual appointment will probably take month to come through, you can withdraw/cancel the appointment if all your concerns disappear overnight.

If he does is on the ASD spectrum, earlier diagnosis is better. If he doesn't a paediatrician and the process should highlight any other issues.

If you are concerned, I agree that the best person to see would be a developmental paediatrician.

Even if you get referred now, it can take a few months to see someone and then for them to do any further investigations (e.g. they may want to send you for a speech assessment and an occupational therapy assessment, etc).

It could be good to 'get into the system' now, as it can take a while to get help. Sometimes the paed will just want to keep an eye on your child with e.g. twice yearly meetings, so that they can keep an eye on what's happening. Then if anything does arise, they've got a historic record of how they have seen your child developing.

Where I lived it referrals took 18 months and longer if the usual route concluded inconclusive evidence.

And there, support was denied until diagnosis.

Your health visitor cannot diagnose ASD ! If she is that concerned she should refer you to speech and language therapy and a paediatrician. Only a paediatrician can diagnose with evidence / support given from a speech therapist.
To have ASD you have to have a difficulty in 3 areas - social, communication and imagination. You can have different degrees of difficulty but all areas most have a difficulty.
Your doctor is right if his symptoms are so slight wait and see. But if he is a diagnosis will help you get services and the right support.
It might be worth asking for a speech referral if you think his biting etc is out of frustration from difficulty communicating which could be both or either his understanding of language or using language. Again if you think this is the case it doesn't mean it's ASD - there are loads of speech and lang difficulties that can easily be rectified.
Keep a diary of the biting. What happened before he bit etc. it will help you look at his reasons why and help you stop it.
DONT wake him from a night terror. Let them take their course. He will have no recollection of them. They are just horrid to watch.
I hope that helps a little.

Thank you all again - reading all your comments has really made me think more seriously about his issues.
Fx the GP is willing to refer.