My friends son has lack of eye contact and his speech therapist says he does not make choices........

[mum2twins]

My friend has asked me to post this (she has just had new baby so long typing out of the window) and is looking for some reassurance or advice on some problems with her 2.8yr old DS.

Her DS was identified as having glue ear at approx 2yrs, he was not speaking and clearly could not hear at all. Following the op 8 months ago he has started to say a few single words or two word phrases. He was given some speech therapy which was play based, but his speech therapist commented that he did not make choices. We have been offering choices but still he seems unable to grasp the concept. He very rarely gives eye contact and when you speak to him he only repeats what you say. He does not seem to do any independent speech or link any words together. My friend has taken to focusing his face on her face when she talks but he is quick to look away. He babbles away as if he is trying to talk. Obviously this is frustrating for my friend especially as she now has ds2 who is only a few weeks old. Has anyone got experience of this and the choice / eye contact thing.

hmmm didn't finish my first sentence- not sure about the states was what I was going to say. But in the UK, no I don't know of anyone misdxed. I do know of several children with whom a "wait and see" approach has been adopted (at age 2 in most cases), and in a couple of cases they've gone onto to received AS/ADHD dx later, and in one case it was decided not to dx. So those borderline cases are recognisable at 2 as well.

Thing is- even from an early age autism can be dxed reliably as the developmental pathway is disordered, not delayed. So take for example the use of echolalia- it's not a bad thing- as it can lead to useful functional langauge, but its not normal to learn language using only echolalia (or echolalia in the main). It deomstrated that lanaguage is being learned chunk fashion ratrher than building block wise iyswim.

"My" dodgy SALT- I've now met 5 or 6 other parents who have had her. Several times I've had the words "oh thank god you feel the same I thought it was just me" (which was what I said incidentally when I found out she wasn't generally seen as being very good). She's the only SALT I've slagged off on mumsnet and I stand by the fact that she is dreadful (although thinking about it I have also complained about a specialist SALT missing my son completely- apart from that mistake - which incidentally put his dx back a year- she was fine- considering the effect that had on him I don't think I'm very angry at all- mistakes happen- but I wouldn't let it happen to ds3 and I wouldn't want it to happen to anyone else).

And, incidently, this is a PARENTING support site, mogwai, not a salt support site. So some people will have had experiences of your profession to make them think "huzzah!" and some won't. Don't worry. You are not alone- social work is a far more villified profession, I hear.

hee hee Scummy- my SW is my new best friend

BTW zebra- the patronising anger comment wasn't aimed at you- we x-posted - I think pissed off (momentarily and often) is a good way to put it. I certainly don't carry anger around with me .

I've never yet met a family where a child has been wrongly diagnosed with ASD. Tbh it can be very difficult to get a dx. Ds2 (2.5yrs) has a provisional dx of ASD as the Paed will not make it official until he is 3. The SALT, OT, Child Psych, SENCO and EYIS are absolutely convinced that he is on the spectrum and cannot understand why the dx hasn't yet been made official. The Paed himself has put in writing that ds2 has all the traits of ASD and agrees that ds2's development is very much disordered but still won't make it an official written dx yet.

Oh good, jimjams.

zebra- you said that you think that parents are too keen on wanting a label. I don't think that's true. Although I suspected autism from 17 months, I was overjoyed when the specialist SALT said he deefinitely wasn't autistic. By the time we were seeing the ENT surgeon about potential verbal dyspraxia we realised there was probably more going on and at a break we sat downstairs and dh said "they're going to say he's autistic aren't they"- which she did, gently as it wasn't her area and she was horrified he hadn't been picked up. (horrified was her word). I ended up on the floor outside sobbing because although I knew it was coming I absolutely did not want it, and at the time I hadn't realised how much easier it would maker my life.

Likewise my friend said she was "overjoyed" when Christopher Place said her dd had global developmental delay (and knowing that girl I have no iodea how they managed to come up with that dx) as it wasnb't autism. Except of course they were wrong.

The fact that we were all off spending 100's of pounds in these places suggets that there is something wrong with he dx procedure-we just wanted to know what was wrong- not that our children were autistic. Why on earth would anyone want that label for their child?

Message withdrawn

Mogwai, I think you are completely out of order making the comments you have done to jimjams,and actually I feel as a salt that I have to completely disassociate myself from your breathtaking arrogance.
She does not 'slag off' salts at all-Jimjams is one of the most lucid,measured and enlightened people on MN.
Even if she did,as she points out,this is a parenting forum ,not a salt one. I for one,have learned a lot about what not to do as a salt from this thread.
Thirdly,you stated a while ago that you would not be posting on salt related issues anymore. I suggest you stick to your original decision if you are only able to come up with such unhelpful comments.

Amazed that jimjams has kept her cool to be honest......

Speaking as someone whose child does not have a diagnosis, I would say that in general all professions involved in child development issues are reluctant to diagnose unless absolutely sure. My Ds2 exhibits a lot of symptons of dyspraxia but no-one is prepared to give him that label yet because they feel he might change as he gets older. He is reviewed regularly by the clinical pyschologist who thinks he exhibits autistic features but will not diagnose him autistic unless they become a lot more marked. I really don't think there is an over-eagerness to diagnose and although initially I was resentful that no-one could give a name for what is wrong I am beginning to understand why they don't and to try and address his problems as they are with or without a label.

I am completely shocked by mogwais comments about jimjams on this thread mogwai, i hope you said those things in the heat of the moment and will calm down a bit

In all honesty though I am sure ALL parents with children of SN, especially sinificant disabilities like jimjams and myself have issues i mean ffs we are human. I really think it would be abnormal if we went through the rest of our life feeling nothing and as if things were 'normal' Have a bit of compassion

significant obviously, i am a lazy cow

caththerese, your grandfather would not be dx ASD even today if his only "problem" was lack of speech. I'm not sure why you think that children are given a dx of ASD for speech problems only OR that anyone becoming "less severe" automatically becomes AS. As I said before, I have never come across a child dx with ASD or AS incorrectly, or adults come to that but LOTS undiagnosed or diagnosed later than necessary. I don't know why there's so many compared to previously, no-one does yet. Someone says that CT is talking about children from her experience but she hasn't told us about any.
The idea that parents are so keen to get a label that children are being incorrectly dxd is just laughable. The huge number of children I see are mostly in the moderate/severe bracket, not hf at all but often verbal which may make people without experience think they are hf when they are not. Even those who are hf, as others have said, have huge problems which should not be underestimated.
Mogwai, your comments just take my breath away and are completely out of context and a personal attack on Jimjams. Something I suspect you've been harbouring for a while and you seem to be the one with the anger. Of all the MNers I've got to know, Jimjams stands out as being reasonable, well informed and helpful. All of us in our situation are angry sometimes, we wouldn't be normal not to be, but we support each other and move on. You don't seem to get it at all when it comes to parents. The problem is yours, not ours.

I don't think that Jimjams should be accused of SALT bashing. I have experience of one of the SALT's she mentions and they do have a reputation for being off mark. The problem is that this can have a huge impact on the services and support you receive.

Of course there are lots of wondeful SALT's, three of my sons have required support from my local SALT service and I have been pleased with most of them.

do you know maddiemo I still don't know how she missed him. I liked her- she was easy to talk to and we had an hour long appointment. About 10 minutes into the conversation she put her pen down and said "um what do you do?" I said nothing but explained that I had been reading up on autism- and thought he may have it, or be very close to the spectrum. All through the appointment she said "well yes that is a sign" and when he was lying on the floor stimming with his eyes (edges) she asked if he often did that. I said yes and she laughed and said that was another sign. Then the next sentence was that he definitely wasn't autistic, that she would dx with mild language delay and that if he had any problems they were certainly mild. And that was it we were lost to the system until we paid to see the "horrified" ENT specialist.

I remember a friend ringing to tell me about ABA and me saying that I'd heard of it, but we'd been told his problems were mild and she suggested it would be like using a sledge hammer to crack a nut. So I do wonder how diffeerent things could have been.

I do wonder how she got it sooooo wrong and I think it was because he has good eye contact (ask ghosty), was friendly (ask ghosty again- he still is), affectionate and sociable. He's like both charlotte moores george and sam and hasn't done as well as expected. TBH at 2 I thought he would end up like donsaurs ds1 (awww bless dinosaur- what a sweety), I'm not angry about it _ I can see why he was missed- although I think he was showing enough signs that he should have been spotted by a pro.

And once again I'm left asking why is no-one using CHAT? He would have failed it fair and square the day we saw that SALT.

Its very sad Jimjams but still we soldier on, we've got no choice.
Erm, mum2twins, are you still there? Any progress with your friend?

I think, 93 messages later, she's hidden

Gosh! so away for a day and . It has taken me ages to catch up. I am seeing my friend tomorrow so will see if any appointments have been made etc and will let you know progress when I get back. JimJams what is stimming with eyes? does that mean looking out the very edges of your eyes and also what is CHAT and would I be able to do the test with my friends DS?

stimming with the eyes is looking out of the corner, or doing things like running things past the side of the eyes (ds1 had a toy fence he liked to do that with).

The CHAT test:- coppertop has a really good clear link to it- this is where we need our SN info section. Let me see if I can find a good site (and yes you could do it)- but be careful as although its only a screening tool it's a reliable screening tool- so "failing" it usually means something.

here's one not the clearest I've seen but the starred questions are the ones that a child should be passing on. If you type CHAT and autism into google you'll get more- and some with longer commentaries.

thngs like the bricks don't really mean anything btw (just screen for general delays I guess)

He used to do the stimming alot especially last Summer aged 18-20months but I haven't seem him do that for a long time now. Great if you can find the link for CHAT, I still cannot muster the guts to say anything just yet, I will just continue to monitor his progress. Quite understandibly I would imagine she would want to kill me for suggesting any such thing, I know how I feel when people comment on the twins not pronouncing their S's properly - it makes me want to punch them.

thanks for the link - crossed posts.

link below....