I am really trying to get my head around all of this but I just can't work it all out. (ASD, well at least possibly?)

[NatalieJane]

About 4 weeks ago we had a run of the mill meeting with our HV re. DS2 (4yo next month), we had some concerns re. his development, she added to those concerns with other things that we (as complete novices to anything SN) hadn't picked up on, and she concluded he has an ASD, and referred him to a paed, ed psych, Portage, and SALT. She recommended we get him in a nursery that she recommended as being a good environment for kids with an ASD because it was more structured etc. so we did, he started properly on Monday just gone, just for 3 hours in the morning.

We met the nuseries SENCo yesterday afternoon, she said she'd spent the morning with DS2 at nursery and aside from "a speech problem that SALT should fix easily enough" she has basically said (though not in as many words) she can't see him having an ASD, or if he has only very slightly, so we shouldn't worry.

I am meeting with the HV, and the guy from Portage on Tuesday morning, although now I'm told that DS2 won't get Portage because he is in nursery, he is still coming as a favour to the HV because she says he knows the educational side whereas she's health. So I invited the SENCo along as well, she replied to my invitation with "Oh yes, that'd be great, they can do the care plan, saves me all that work" and a similar comment when she realised the HV has already done the CAF form: "brilliant, those things are about 12 pages long, now I don't have to do it". I want them all in the same room so I can hear how one person can come up with all these problems he has and call it an ASD, whereas another seems to think "a few meetings with a SALT and he'll be right as rain".

Problem being, as I said way up there somewhere, even before the HV gave it a name, we had our own worries about his developement, and now I am really worried that if the SENCo believes there is nothing wrong, she won't fight to get the provisions that I am of the opinion he needs. (Though I again stress, I am no expert, but there are things he can't do/handle that other nearly 4 year olds have been doing for years)

I would love nothing more for the HV to come in and say she was wrong and he's fine and all of this has been for nothing, but I know deep down that there is something going on with him, no matter what name they call it, something isn't right, but according to the SENCo, we need to be firmer with him because he is running rings around us.

I don't even know why I am posting, I know no one has the magic answers but I am really confused, has he got a condition that could possibly affect the rest of his life? Are we to blame for letting him get away with things? (Though IMHO, we don't let him get away with things, though we do struggle to manage his melt downs at times, what are you supposed to do with a 3 year old who is choking because he's screaming too much, and hitting/kicking out at everyone and everything in his path just because someone has moved his toy from it's place, or because he wasn't the first one to get into the car etc.?) Has the HV blown it all out of proportion? Is the SENCo just trying to save money, resourses, whatever?

Gah! Sorry think I just needed a blow out.

I havent ever heard of a HV giving a firm DX before, normally it has to be a Paed/Ed Psych/ Camhs. Have you seen a Paed yet?

What where you concerns with your DS before you spoke to the HV?

No she has referred him to a paed for a formal dx, but she used to be a paed in her last post, so I had kind of resigned myself to her being fully aware of it all.

Our concerns were: he is still in nappies full time, his speech, though it is a lot better than it used to be, I can understand him around 80% of the time, strangers find it very difficult, if not impossible, to catch what he is saying, he has strict routines that cannot be broken, he goes into complete melt down if for whatever reason they have to be broken, he doesn't have any pen control (the HV said he has Hyper Mobility Joints, which means he can't hold the pen correctly, SENCo says he's a little boy, they don't want to be colouring, they want to be playing the mud) he has fixations on things, Cars (the film), and Thomas the Tank, when I say fixations, I really mean fixations, he used to line things up by colour before he even knew his colours (I'm talking 11 months, cars and crayons all in a straight line), he can't walk very far, well he is physically able to, but he gets so far, decides he wants to be carried because he is tired (another point we don't know how to handle, if we carry him - we give in, if we don't carry him - he will sit/lie down and kick/hit/scream/choke/etc., much to the delight of the people passing by.) Ermmm, I'm sure there is more, but am useless at remembering all at once off the top of my head.

Well it certainly sound like there are some issues there!

I would write a list of all the issues that you think DS has for when you see the Portage worker on Tuesday - if the HV used to be a Paed then I would be inclined to side with her opinion than the SENCo - especially as she hasnt seen him for longer than one full day.

I wouldn't pay much attention to the SENCo's comments, especially when your DS has only had about 2 sessions at the nursery. They are probably letting him do his own thing, and really until they make any demands of him, his difficulties may not be that apparent if he is in passive mode.

The SENCo seemed to be basing her opinion on the fact that he does interact with the other children and adults. She said the children she's worked with before who have had an ASD won't even allow another child into the room, or look people in the eye. DS2 does have some difficulty in understanding some people's (mostly children's) body language/tone of voice, though he doesn't cower away when he doesn't understand he tend's to just ignore them and carry on with what he is doing.

SENCo mentioned he was telling her all about his family, things he liked doing, and reptiles, I asked him last night what a reptile was because he has never shown any real interest in animals etc. and he didn't have a clue what a reptile was, so she has obviously misunderstood something he was saying, which makes me wonder else she has misunderstood when she has been interacting with him.

But then I get the guilt trips, I am inclined to believe the HV, whether it's because since she first saw DS2 she has been in regular contact, she's done everything in her power to get the referrals out ASAP, she's occasionally just dropped by or rang to see how we're getting on etc. or whether it's because she used to be a paed, or because she has gone through each and every issue we have raised with her and explained everything, I don't know, but I feel guilty because it feels like I am almost hoping she's right, even though that means he does have this condition that will affect the rest of his life, I am hoping she's right so that he can get the help and support that she is offering to get him, because regardless of what the SENCo says, I know there is more going on than a delayed speech problem.

But then it's catch 22, is there more going on than a delayed speech problem because we're too soft? (Though his brother's have turned out alright!)

I don't bloody know, I just don't know what to think anymore.

I can't say whether your DS2 has an ASD or not but I can quite confidently say the SENCo is talking -bollocks-- misinformed. ASD means a difficulty with social interactions, not that the child/person is unable to engage with someone else at all.

I think you have to take the view, that your DS is having difficulties now and to go ahead with the referrals. If his difficulties resolve over time that is great, but if not, he is still very young and if he gets the right additional support he needs now, it will help him on his way to reach his potential.

bollocks argh! lol

Have just remembered some more of his issues that we had picked up on (Told you there was more!)

He has something going on with his hearing, is very overly sensitive to any loud noise, his toys, loud music/tv, a car horn, door bells, he either covers his ears, squeezes his eyes shut, and needs coaxing to let his ears go, or he'll cover his ears and go into melt down, kicking screaming etc.

He cannot handle change, this week with starting nursery, he's been awake for more of the night than usual, he screams the place down when it's time to go, doesn't eat his breakfast, won't get dressed etc. but once we walk into nursery he is a bit quiet at first but then fine.

He can't dress himself at all, or put his coat/shoes on etc.

He wakes up most nights screaming because his covers aren't exactly how he likes them, or he's moved about in bed and one of his toys that have to be there in the exact posistions have moved, or he is frightened of something unknown and he just want's some reassurance.

Am sure I'll remember more!

I'm pretty new to all this too, but it seems fairly obvious (to me) that this SENCO hasn't got the faintest idea what she's talking about.

Her dropping such heavy hints that she likes to avoid work where she can is not a particularly good sign.

Can you speak to your HV and/or portage about the nursry you've chosen? Did they recommend it? If not, would there be another they have worked with more in the past? There are ways they can tactfully hint about choice of nursery without overtly criticising the one he's just started in.

He's only been there a few mornings, so it would be better to change now than later.

Sorry, don't mean to advise you to cause your DS upheaval, but I wish I had known earlier some things about the nursery we're using versus others nearby. Now it's too late to uproot my DS for various reasons.

Polar eyes, we are deffo going ahead with the referrals, I am also part way through filling in the form the LEA have sent me to request an assessment of his needs to hopefully get a statement (if needed) in time for school in Septemeber. My main concern is that if the SENCo doesn't believe there is anything going on, she won't fight for the help he could have now, she mentioned a 1:1, but I know enough to know that they don't give them out willy nilly, and if she doesn't really think he need's it, she's not going to waste her time is she?

I don;t know how it works elsewhere, but the decision for DS1 to have 1:1 at preschool was decided by the Ed Psych (or rather the "panel" after the ed Psych had submitted her report). I remember preschool being naffed off about it as it was pita for them to organise it but they got over it. It is usually funded by the LA so the nursery would be unlikely to turn it down.

If you aren't happy with the nursery, it is your right to move him; I withdrew DS1 from his first preschool setting as they were hopeless. I know this one came with the hv's reccommendation, but sometimes they don't live up to the reputation they have/not every child is suited to every setting.

This nursery he has started was recommened by the HV, it is actually a new one only opened in September, it is part of a small chain with which she had worked with before. She said this one was more structured (as in routines etc.) We live in a small village that is right next to another small village, there are two nurseries to cover both villages, the other one is apparently one large room with more of a 'free for all' than the one he's at.

TBH, I am happy with the nursery itself, he is happy (once inside it!), and the girls there are great with him, he has become very attatched to two of them already. And besides, as above, there isn't really any choice, the other nursery would be a disaster for him. I am hoping on Tuesday when the SENCo meets the HV and the guy from Portage, they will all cross examine their notes or thoughts about him and come up with something, it's just until then we are left in this limbo.

The decent thing to do would be to ring the HV and tell her the SENCo's views, but TBH, I am interested to hear what they say to each other IYKWIM? I have left her a message to say the SENCo is joining us, but nothing else.

Sorry misread your OP and thought you just said HV recommended nursery in general.

Meeting with everyone sounds like a v good starting point. Will be interesting if you try to bring out her views at the meeting, ie that 'he'll be fine'.

She'll either do so and be shot down, or you'll find she'll be surprisingly quiet about it. My money would be on the latter.

X-posts. Agreed that it will be interesting to see what they say to each other with no prior warning of SENCO's views.

meeting sounds good plan. You may find she changes her tune once the other professional's give their views.

I think the SENCO is guilty of thinking she knows more than she does, The manifestations of ASD vary widely (my son, for example, is really quite autistic but has no issue with other children being around him) she may have seen a few examples and concluded that that is what ASD always looks like. It's great that your DS is functioning relatively well in nursery and I shouldn't worry too much about the SENCO because if she repeats what she said to you then it should be clear to the other professionals that she doesn't really know what she's talking about

Well I've just been to pick him from nursery and apparently he has really come out of himself today; chatting away, building tracks, counting, etc. and he has come home with no tears or melt downs (he hasn't wanted to leave all week, have been having to carry him in in the mornings kicking and screaming and drag him out at lunch time kicking and screaming) so hopefully the change to his routine is starting to settle.

We moved house in May this year, our old house to him is still 'home', and this house is still 'the new house', I thought we'd just be getting him settled in nursery in time to start school!

I think you are all right about the SENCo, though I hate saying it because it feels like I should be hanging off her every word, hanging on to the fact that he is fine and that I am some how letting him down to believe the worst of the situation, but I am certain there is something more than speech delay happening, I am far from certain exactly what is going on, but just for the fact that the SENCo has picked up on so little of his problems, well, it doesn't lead me to have much confidence in her or her findings TBH.

We had a similar thing with the old SENCO at our school. She kept saying 'yes, but the other boy we had with ASD did this ... or needed us to do that ... or was able to do x". She seemed to think all people with ASD are the same. She never directly came out with the immortal 'but he can't have ASD, he makes eye contact', but I'm absolutely sure she would have done sooner or later.

We later found out that she had been in the post forever (ie prior to the time when you had to undertake extra SN/SEN training) and had come into the role via other roles in the school. First she was a parent of children there, then she helped out voluntarily, then she became one of the admin assistants, then she was a TA, then she took up the SENCO role.

Please don't feel you are letting him down by thinking he may need extra help and support. I do understand how you feel, most of us have been there at some time, but you absolutely aren't. You are being fantastic parents by not sticking your heads in the sand and pretending there's no prblem. By making sure all the possibilities are properly investigated you are doing the best for him, and ensuring that if he does have additional needs they will be met.

Dh and I struggled with the idea of going for a diagnosis at first, but we are so glad we did and really wish we'd pushed for it sooner. (We have a dx of ASD from the Paed, but will have been waiting 18 months for a multi-disciplinary assessment when he reaches the top of the waiting list next April - he will be 9 then.)

Fwiw, our GP, the Paed and our Ed Psych have all said the same thing about the importance of trusting the gut instincts of parents. As others will tell you here on the SN boards, no-one is more of an expert on your child than you.

Its great that he settled better at nursery today. As you said, its a good sign that he is starting to accept his new routine as the norm.

Have just had a very reassuring convo. with the HV, (I love that woman, she may be a lot bit condesending at times, but she knows her stuff!) I had asked if we could rearrange the meeting so DH could join us as well, I told her what the SENCo said since I didn't want to be worrying about it for however long it is to set up a new meeting. HV has basically said the SENCo is talking rubbish, and "not many SENCo's have the qualifications to have any input in a child's health, I am a HEALTH visitor, I do health, she is just a small part of the jigsaw that will make up DS2's support team, and I wouldn't worry a jot about her, or her undoubtedly unqualified opinions". Love love LOVE that woman! I had been really quite bloody miserable since we saw the SENCo last week, worrying he won't get the support he (IM(also unqualified!)O!) needs, but, now feel like I am slowly getting to grips with 'the system' and really feel like the HV has our corner. And yes Moosemama, HV keeps telling us we're the experts, wish it felt like it, most of the time I feel like I'm walking around blindfolded, the system may be falling into place but I keep reading things about Autism and thinking 'yep, he does/n't do that as well' the list get's longer every day.

DS2 did really well at nursery on Thursday and Friday, I had let him take his Lightning McQueen car (obsession number one) in with him, seems to have given him a bit of a boost, Saturday and Sunday we had melt downs because there was no nursery and today no melt down about going, though he was a bit quiet when I left him. Again he took his car in. I need to get a bit better prepared I think, I had not forseen the weekend being a problem, it's obvious now, but it didn't cross my mind for one minute to try and explain to him that he wouldn't be going.

Anyway, just thought I'd update since you were all kind enough to advise :)

Just read through the post and then saw your update.

Sounds like your HV is on the ball and that helps.
Don't worry about SENCO if he's happy at the school then that's a good start whislt you get everything else in place and sorted. HV seems to have reccommended it because of the routine and structure .. And he seems to be happy in that environment.