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.

Really, Catherine? Surprised to hear that. Many children with autism I've met have led people by the hand to what they want.

I'm afraid that leading people by the hand in order to get something they want is a classic autistic trait.

I have also been very careful to point out that I am in not in a postion to diagnose, and that just one of these signs is not worrying in itself, but when considered togaether indicates the need for further investigation.

And you are right, I may be totally wrong.

All respect to you jim-jams - and I hope my posts have not sounded presumptuous! Wish you and you little boy best of luck. I read a lot about autism when my dd was almost 2 and not talking. So sometimes I have a (perhaps false) sense of expertise in these matters. The main thing I picked up from my reading was that young nonverbal kids who communicate without words (pointing, leading to things, showing interest and responding to jokes etc etc ) are not autistic. But then again, the syndrome as described in textbooks often makes the poor kids sound rather terrible, like unfeeling detatched little 'aliens' (I have come across this particular analogy in autism literature, and was outraged!), and as parents such as yourself will testify, this is simply not the case.
Anyway all the best

cathterese- this little boy is showing enough signs that he should be properly assessed- preferabvly by a multi disciplinary team over a period of weeks (as happened with ds1). Autism can be reliably dxed at 2 - and the earlier (and more) intervention that is given the better. I have no idea whether he is autistic, but rather than blaming the mother, the SALT should be referring him on.

In the UK autism is generally dxed far later than it should be.

It's always blame the bloody mother, isn't it? It makes me so angry. Your kid is dyspraxic? You don't encourage him to run around enough. Your kid is autistic? You don't interact with him enough. Your kid is a suicide bomber? Hey, don't know what you did, but it has to be your fault, you're his mother...

Jimjams,point taken. You are so right about the SALT bubble wand waving scenario.
I have seen some of my colleagues do similar. Many are completely out of their depth with children with ASD.

(I have been worried about parents of children with ASD being sent on hanen course for one thing,which I think are completely inappropriate.
My view with regards to severe Autism is that the environment and communicative partners have to change, not the person with Autism.

(When I trained,graduated 10 years ago so not such a long time,the solid London SALT department I attended had only just appointed a lecturer specialising in Learning Disability!)

My DD (5 today!!!) and diagnosed with HF ASD has pointed since a baby- and I have that in writing from her nursery reports. She went to nursery 2 days a week from 6 months of age. Also talked about her great socialisation skills. Hard to make sense ofd what is a sign.

Using an adult's hand as a tool is cited in some of the literature from the NAS (National Autistic Society) as one of the signs to look out for, if I remember correctly.

Interested in what you say Cath about children who don't talk until very late. There is a book called 'Late Talking Children', the author says that in some asian cultures a late-talking boy is seen as a blessing...but he doesn't say why! Intriguing.

Sorry, have only skimmed this thread but have picked up the view that autism is overdiagnosed!! My DS ws dx ASD 8 years ago (althoug clearly something "wrong" much earlier) and in all that time I have NEVER come across a child who has been wrongly or misdiagnosed as ASD, and I know a LOT of parents of children with ASD and quite a lot of children directly too.
My DS is now 8, non-verbal and severely autistic with learning disability too. My DD is nearly 2.5 with glue ear and TONS of communication. A bit slow to start talking and not very well articulated but not possible to confuse her with a child with ASD. I admit that I did wonder and worry when she was younger, but she DOES have a higher chance of having ASD, but I knew she was completely different to DS.
I've always been quite skeptical about the whole glue ear and grommits thing when it comes to kids with ASD, how many do I know who went through that? OK, I'm not saying they didn't have glue ear or need grommits but this very often deflected and delayed people looking further than their speech and realising that their communication was "dodgy"!! I feel a lot of parents were given false hope and greatly delayed in seeking appropriate help for ASD and/or communication problems by professionals not looking properly at communication. The ENT consultant we see clearly doesn't specialise in communication and has little interest in it, but a system where a check list is completed at ENT (CHAT or other) would be a good idea imo.

why isn't CHAT used??? I just don't understand why it isn't used at the standard developmental check. Far more use than getting a child to stack some bloody bricks.

With my cynical hat on I suspect it is not used deliberately because then these children would be picked up and they would have to do something with them that much earlier which would cost money and use resources which are not there. If they took that approach (which I agree they should) they would need to restructure the whole system to support it.

I guess what I wonder about with the autism thing is: why was it considered super rare years ago, and is now relatively common? (20 years ago it was deemed to afflict maybe i in 50,000 or something like that, annd now it is like one in every 200 or 150 children?) And why are they nearly always boys? Does anyone know of any rationale that has been proposed for the gender disparity with autism?
My grandfather apparently said not a word until he was three. These days I guess he would've been thought to have ASD. But he grew up normally in every respect. He was not distant or emotionally uninvolved or impaired with his communication - he definitely didn't have Asperger's or any of the mild forms.
I wonder how many young kids currently diagnosed with ASD will 'recover' from their diagnosis? I just don't believe there can be that many truly autistic children around, unless something has suddenly and grotesquely gone wrong with our environment, or (I know this is an old chesnut) the MMR vaccination is to blame, or something like that.
I am not doubting the mothers who have posted about their autistic children - I am sure you all know that something is truly different about your child. But should that difference entail the child having to wear such a hard label?
That said, the earlier a speech delayed child gets help the better, and I am sure that a young child misdiagnosed with autism is not going to be harmed by the interventions. But what about an older child? If an older child shows signs of becoming more connected with the world, and more verbal (in which case, of course, the moderate to severe autism diagnosis could be ruled out) is it fair to lump that kid with a dx of Asperger's? They might just be a quirky kid. I read something once by a therapist (sorry, can't remember exact website) and she said she has seen many teens diagnosed with Asperger's who are keen to have that label removed.
I do hope, by the way, that my thoughts on this subject do not offend anyone.. I know I may well be speaking out of my fundament, since I don't have an autistic child myself. I am just very interested in this topic as so many people these days are being confronted with it. Eg a woman I know of, whose son is 2.5 and non-verbal - but his family is also bilingual: the mother doesn't speak English at all, the father speaks both English and Arabic (we are in Australia) In this case I personally think the autism diagnosis is premature. They are such different languages and the child ought to be given more of a chance in this difficult language background.

... Alternatively, Could Asperger's/ASD sometimes be something that a child outgrows? Now that would be a nice possibility.

my DH also didn't speak until 3yo, and he's definitely not ASD, either.

There is a HUGE difference between a quirky kid and someone with AS. Have a look through yesterdays guardian (education section) about the young adult with AS who was cuaght up in the train bombings- and read how much training he had to have before he could use the underground alone. Read books like MArtian in the Playgrtound. People with AS are not quirky with minor difficulties they have very big problems with everyday life. Incidentally reseach comissioned by the NAS showed that about ??? can't remember below 10% anyway of adults with autism live completely independently. I actually hate the idea that there is a bit of autism in all of us- because there isn't. There's a difference between having a bit of tendency to geekiness and a real disability.

About 3% of people with autism "recover" - generally this is not dependent on intervention they receive- although intervention can certianly help with life skills etc. This is why autism is considered a lifelong disability- 97% of people with be disabled for life.

DS2 didn't talk until 2 and a half. I thought he might have verbal dyspraxia, but I knew he wasn't autistic- not remotely- he communicated with ease.

The CHAT test doesn't test speech at all- it tests communication- which is why it is a reliable indicator of children at risk (very at risk) of an ASD. Regression can occur later- so a child could pass CHAT and then develop an ASD, but it would be extremely rare for a child to fail CHAT and then not have a communication disorder.

I think from reading your posts your actual knowledge of ASD is pretty shaky to be honest Caththerese (sorry but I do).

just re-read that- and its a bit blunt- sorry think I have PMT or somethiing. The thing is if you have a child with a communication disorder from about age 2 the differences become quite obvious- and the time pre-dx is awful. Well meaning parents of NT kids will often say "oh he's just a bit slow, nothing wrong, will catch up" and to be honest its just not helpful. At that age I tried taking him along to new groups and left most in tears (and I'm not alone- most of my friends now were the same). I knew there was something different, but the signs were subtle and most people pooh poohed me if I mentioned it. I couldn't talk to dh or my mother and had to hide my autism books as I got such grief from family for reading them. And I spent long painful days surrounded by NT children knowing that something was up.

With the dx we could access proper support, I could read my books openly, I could meet people wiith autistic children and get support from them. And gradually people stopped tellling me he would grow out of it (took my MIL until he was 5 but even she's stopped now). My story is common- and if you haven't lived closely with a child with autism I think its easy to misunderstand how different they are. You think you're being nice by saying "oh they'll grow out of it" but if a child of 2 isn't pointing it's unlikely that they will (although they may well come on leaps and bounds and end up high functioning- they'll still be autistic).

Caththerese1973-I was a bit annoyed by your post as well, I must admit. My DS is 6 and has AS. Day-to-day life with him is very hard work, despite his being at the "high-functioning" end of the spectrum. Everything is difficult; getting him to eat (anything, let alone a balanced diet); trying to get him to sleep; coping with his extreme level of anxieties. Like most parents of autistic children, I have read extensively since his DX and know his difficulties are typical. I can only see the "label" as being helpful in getting him the help he will need as he gets older and I certainly do not regret his having it.

I think as well that many people with no experience of autism don't realise is that many people with HFA/AS can have big sensory problems (which can contribute to the eating problems for example). My son is not remotely high functioning but the children I see who are have different problems- but they are still very disabled by it- and they have the problem that a lot more is expected of them.

I know of one very high functioning boy with AS,- very high functioning- you would think there was nothing wrong- but he has almost zero understanding that other people don't automatically know what he is thinking unless he tells them (and he's 17). That's a big disability to carry around when you are trying to deal with other people.

I think Cathterese you think that ASD is dxed according to speech- it isn't- speech hardly comes into it.

Although recieving my sons diagnosis was an upsetting time, it also got the ball rolling in terms of the help my ds and I recieved. If we had waited to see if he'd "just grow out of it", we'd have missed out on all that vital support my son desperately needed. His "label" has actually helped him.
I found it quite offensive when others dismissed my concerns about autism, Even my health visitor tried to pacify me by saying that most 2/3 year olds display certain behaviours typical of autism. It was so demoralizing when others just didn't take my concerns seriously.

I think you guys are being a touch sensitve -- I mean Catherine is not really commenting on your indiv. cases, she is only sharing her own experiences (children she knows who it was were suggested autistic but they weren't....).

Better question might be, have any of you yet to meet any children dxd ASD, and did it later transpire the child wasn't ASD?

On a slightly separate note, I do agree with much of what you say, Jimjams, but from reading your posts over the last few months, it does seem that you have some issues that you are still dealing with, and that you are still angry. Much of your anger is directed towards health professionals, especially SLTs.

It sounds as though you have had some poor experiences in how your child's diagnosis was made and handled but this does not reflect our profession as a whole, and I'm afraid I am becoming offended by your constant (thinly veiled) anger, much of which is directed towards my profession.

One post you made on this thread praised your SLT, who was privately paid. Your post implied that she was only good because she was private. This does a tremendous disservice to NHS therapists. We are all trained in the same way, as you must know. The difference is down to caseload (and other) pressures, as you also know.

"I really don't know what they teach SALTs". No Jimjams, you don't.

I really don't think your constant readiness to criticise our profession is helpful to other parents posting here, many of whom are new to the whole thing and need to have faith in the professionals they entrust with the care of their children's health and development. I know you've had a hard time, and your advice is usually good, but your anger is not helpful to the people who come here for guidance. You are setting them up to suspect the SLT will be incompetent, and I resent that

My comment wasn't intended to be a personal one towards Caththerese.

i think Jj is p*ssed off about a lot of things, mogwai (and who wouldn't be in her situation).

You might want to know, I really appreciate some of the feedback you gave me a while back about my own concerns about my DD's speech.

I wonder if it isn't becoming almost trendy to give some kind of diagnosis for difficult behavior, rightly or wrongly I don't know. Which is not to infer anything about any particular MNers child, either. Maybe it's just an extension of the movement towards recognising all children as individuals with individual needs, but maybe some parents are too keen to find a label rather than just view parenting as hard work, roll up your sleeves time (again, not referring to anyone specifically).

Sorry for thread hijack, would love to lurk on a sane discussion on some of those issues!

NO QZ I haven't! Not in the UK- the US children are dxed younger and there (I did apologise for ebing a bit blunt- I don't think Cathterese's thought are unusual- just that she misunderstand - like many- what autism actually is)

Mogwai- the private SALT was in school becauuse the NHS SALT was on maternity leave- she was a particualrly useful person to see the incident as she worked on a weekly basis with my son and knew how he normally behaved. Shortly after this incident the NHS SALT returned and the private SALT and NHS SALT met regualrly to discuss problems. The private SALT attended the annual review on behlaf of both of them, and represetng the NHS SALT. When I aksed the NHS SALT whether she thought the school were coping she said no. This particular NHS SALT is very good, but doesn;t have enough access to children to be particualrly effexctive (something she makes no secret about). I like her a lot, and she has provided personal support if not much practical support.

I have come across one NHS who was, is and always will be useless. Last month I met a mother (yep yet another one) who had been upset by her comments about her son. She is a dangerous woman as she sees parents at a very tricky time and is about as negative as she can be. 3 professionals (of various types) have also slagged her off to me (off the record of course). I have no problems with the SALT profession I have a problem with this one woman.

What would you do with a child who at 2.8 was lining toys up, leading by the hand (presumably rasther than pointing), using echolalia? This little boy shlould be referred on. If the SALT doesn;t know that then she is not being trained properly.

And please don't patronise me about my "anger". I get annoyed when I hear of this sort of siutuation, But leave off the armchair psychology and my "issues".

I'm sure they'll check if the salt is competent for themselves, mogwai. Perhaps you are the one being oversensitive here?