Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Special needs chat, Parents with disabilities, SN teens, SN legal, SN education, SN recommendations.
Pointing - what's the big deal?(40 Posts)
Seriously, I just do not understand why pointing or the lack of it is SO serious. Our evil speech therapist made us an oso helpful list of stuff that was wrong with DD (aside from the thing we asked help for, that she doesnt talk much at 3.3 ):
She doesnt answer her name
She doesnt make eye contact
She doesnt play with other children
She isnt pleased to see us (her parents)
She doesnt imitate us
She doesnt play imaginatively
She wont focus on activities
She isnt potty trained
She has stroppy tantrums when thwarted by her brother (honestly, which toddler doesnt?)
She can read
She likes numbers
She likes music
She likes computers
She will watch videos over and over again (this is actually my fault, because I record phrases for her for fun on the iPad, and she watches them over and over again until she can say them. DD saying now is the winter of our discontent made glorious summer by this son of York is about the cutest thing ever)
We either disproved these problems (first seven on the list), or explained to the Ed Psych why we dont think theyre a problem particularly (I mean, if she was talking normally, who would be concerned because she could read theyd be telling us we were wonder parents) and so the educational psychologist with a triumphant air said yes, but you say she doesnt point! as though it were a necessary and sufficient condition of an ASD diagnosis. She doesnt point, she never has. She points at words and letters as she is reading them, and points at objects in books when she is naming them, but she doesnt point at things that are far away. This is something I was going to bring up with the opthamologist at her next appointment, as I am blind as a bat and poor DD may well have inherited my childhood myopia, but it is not something that concerns me about her behaviour.
I really really resent the way that DDs teacher, evil speechie (not the nice new ones, theyre lovely) and the Ed Psych are trying to make me concerned about my child. Shes not typical no, but we dont all have to have cookie cutter children surely? She can be different from the norm without having to have some kind of pervasive developmental disorder? And how is an ASD diagnosis, if we managed to get one which I seriously doubt, going to assist DD at all? If she could talk and was potty trained, I would have absolutely NO concerns about her. NONE. And the potty training is more annoying than really worrying.
Her new speech therapists think she has tons of receptive language, and that shes picking things up incredibly quickly - shes had two sessions of PECS and is now going to her book, picking out what she wants, getting my attention and giving me the symbol while saying the word and making eye contact, and is using effectively about 100 symbols including action symbols. Just working on getting her to say I want. She has also started making and using three part sentences, adapting rote phrases to make new phrases, creating an external narrative when watching TV (Oh no train running away!) and when playing imaginatively and lots of other brilliant language development, not to mention social development of the kind they like (I couldnt give two hoots if she plays with other children, she plays with her brother and thats all I need from a three year old, but she has started playing more with her classmates). So why on earth, given this wonderful progress shes made, is the fact that she doesnt point to distant objects the be all and end all of the Ed Psychs gloomy prognosis for her? I dont want to get to the point where Im teaching her to do stuff simply to get the educational psychologist off my back. I probably could teach her (like a trained monkey) to point at distant things, but I honestly do not see why its such a big deal? Am I missing something?
BTW, someone told me to get When Babies Read on another thread, AWESOME book, thanks for the recommendation!!
mummytomoog, I'd recommend you start reading Stanley Greenspan. He was the leading child development expert of his generation and believed in building up a profile where you judged a child's abilities according to how they are at their best - as opposed to a deficit-based model. He was a great man and respected by everyone. I think it was reading him that gave me the strength to get the profs. to see things my way.
www.icdl.com/distance/webRadio/documents/10-8-08b.pdf is a good place to start because it is the script of a radio broadcast he made in 2008. He speaks well but his books are challenging - his prose is a bit dense. If the link doesn't work google "the misdiagnosis of autistic spectrum disorders +stanley +greenspan"
Eye contact has always been one of ds1's main ways of communicating. He uses it in very skilled ways, to play jokes for example. But he won't use it with people he doesn't know.... or he won't use it if he thinks he's being tested, it's an effective avoidance strategy, being skillfully used (but observed as a deficit).
Well yes, ds1 once had his private and NHS therapist visit him together in school (when he was in the evil mainstream school). His NHS therapist arrived first and they ignored each other. His lovely private one arrived and ds1 grinned and climbed on her lap and gave her a cuddle. NHS one stated that she didn't know 'he was capable of that' Leaving communication programmes doesn't generally morph into a working relationship with a child.
I do think it's important to note what a child doesn't do easily with therapists etc just because they're unknown, but it is also important that the therapists don't just write the child off because they've never seen them do x, y or z. I think it's much better if everyone working has an idea of the range of behaviours/abilities a child might show. We've been very lucky in the latter years that the people working with ds1 are very aware of his abilities, whist understanding his difficulties. BUt these people are with him day in day out. For everyone else video can make the point.
Ps forgot to say, my little man is hugely different at home and always made eye contact, played with his brother etc. We are also quite routine led so our way of life doesn't present huge anxieties for him but once in school or somewhere unfamiliar he wouldn't make eye contact, even with me. I think we had unconsciously worked our life around his difficulties as they gradually crept up on us without even realising that we were.
Hiya the whole thing is a minefield. I felt the same as you at 3 my little man wasn't talking and although I knew he was late, the same thing happened with his older brother who turned out fine by the time he started school. The A word was never mentioned to me in nursery although he was under early years and SALT. Once he started school the sh@t hit the fan and all sorts of behaviours and anxieties came out, along with his speech difficulties, pretty much had the year from hell. The A word was mentioned, or hinted at, pretty early on but I was still adamant it couldn't be that, partly due to his brother and my limited knowledge which only stretched to my friend's son who is completely non verbal etc. To cut a v long story short, he is now 5 and I am anticipating a diagnosis of ASD pretty soon. But tbh the diagnosis seems pretty irrelevant now, we KNOW what his weaknesses are, school are very good and helping with the statementing process and actually I can see him developing and making progress all the time, so diagnosis or not, I am not writing him off but I will have it up my sleeve if and when I need it.All I am saying is, keep an open mind. It can feel like they are criticising your child or you - I swear my child's SALT doesn't have an ounce of warmth or compassion in her soul, the stark way in which she writes her reports - but, I think she just understands the system well and writes in such a way to gain maximum support.
With the lovely ST, DD is exactly as she is at home, and at nursery she is generally as she is at home. But with the EP and the evil speechie, even when they were at our house, DD was uncommunicative, tantrummy and resolutely refusing to make eye contact with them. But she was cuddling the new therapist within half an hour and chatting away (in nonsense) by the second session. Partly it would have been the beard on the EP, she's very intolerant of people when she can't see their faces properly, but partly it was the way they interacted with her.
Thanks for all the advice - we generally do film her when she's doing fun stuff, or playing nicely, so we'll make more of an effort to catch her doing the things they say she doesn't. Evil speech therapist has left, and EP might improve on closer acquaintance. Nursery teacher is actually being very conciliatory, although she still doesn't believe that DD reads, even when shown her reading a book she's never seen before. I don't claim she understands it, but she's certainly reading by sight.
Oh the other thing wrt to the 'lying' is use video.
We were told that ds1 didn't make eye contact, didn't understand x, wasn't able to do y. This was in the days before easy videoing so I just argued with them (unsuccessfully - it was important as SALT was refused because he wasn't 'capable of anything' - never mind that that might be seen as a reason to prioritise therapy, apparently not).
However, fast forward a few years and I wanted school to up their game with him a bit. So I videoed what he was doing at home. They said 'wow' and changed the way they worked with him. I use videoing with SS as well.
I never 'tell' the professionals anything now, unless they know your child well they are unlikely to see them as you do (and your child probably will behave differently with them). However, I frequently 'show' them. Just short videos, a couple of minutes is more than enough to make the point you need to make.
I would like them to raise issues they think are of concern, but the bias towards diagnosis we are encountering, not to mention the out and out lying, is making me feel like DD would be better off without their 'support'.
Is it possible that it's not what these professionals are doing, so much as how they're going about it, ie not being led by your concerns or individualizing the assessments and so on? And where has the lying come in? Is this stuff they have said about your parenting/home etc.? Because if so then this is a huge barrier, which can lead to anger and resentment, which can lead to a breakdown in communication from your part, too. I have been there with nursery school staff (dd with a hx of severely delayed language). It was an emotive experience, and not a happy place.
That said, if you have one prof who is truly your partner in all this (namely your lovely new SaLT), then I would listen to him/her above all others but be mindful to let things unfold with the EP and keep them in the picture. You never know when they might come into their own. Ultimately it sounds like the language skills are coming along very nicely, and over time, everything should come together.
In our case, following angry and resentful experiences with tactless and inappropriate comments from nursery school staff, rubbish developmental paediatric registrar, useless NHS SaLT, in the end we have gone round the houses and ASD is back on the agenda. Aged 7. You really never know how it will pan out.
There is no need to 'teach' your dd pointing, but there is loads you can do alongside your lovely SaLT to maximise your dd's other non verbal communication skills.
It is hard to walk that fine line between being 'critical' and 'forgiving' of these well-meaning profs. But it's worth doing.
Yes PECS was a bit of a revelation to us as well. Definitely helps with frustration. If she's imitating well I'd start using Makaton as well. My don has always been very communicative but now in his teens has only developed one clear word. He has a very swish communication aid (for the last year) which is now his main method of communication as he can easily produce sentences with it (and has massively improved his speech actually) but he still uses sign, PECS, google maps, photos, vocalisations, words, and very occasionally typing to communicate.
SALTS often stick to one method, but if you have a child keen to communicate they will, ime use many methods. Makaton is faster than PECS so although ds1 was unable to use Makaton for years as he couldn't imitate it has stuck around even now whereas he doesn't use PECS now unless someone insists.
It was someone on here ( thanks davros) who suggested using Makaton alongside pecs and I've often thought what a good bit of advice that was. Again sign encourages speech.
MummytoMog, your DD sounds lovely.
I'm not in a position to give anyone advice. My DD (3.10) was showing some red flags from an early age, and I ashamed to say that I did not pick up on them. I knew that she had speech delay, and I had a nagging feeling that things weren't quite as they should be, but I wanted to listen to everyone else around me who told me that she would catch up in her own time, and that I was comparing her unfavourably to her older brother.
My DD has made fantastic progress over the last while, but she has not caught up with her peers. She can now point, talk in sentences, and respond to questions when she wants to. And I am so delighted about this, because I know that she will continue to progress. However, there is still no proper conversation between us. She is popular with the other children at her pre-school, but she has no concept of friendship. It is coming up to Christmas, and the peer DDs of my friends have long lists for Santa - my DD does not.
She has been seen twice by a developmental paed. The last time she said that DD was demonstrating behaviours consistent with ASD, and that she would like to refer her for assessment for ASD, and for assessment by EP. She said it was completely up to us though what we decided. We chose to proceed with the assessment for a number of reasons. Mainly, because the difficulties were there and we hope that the assessment will help will help with provision, but also because all the things that DD has difficulty with, my DS could do without any teaching, demonstrating or explaining - he just did everything intuitively. I suppose deep down that I am worried that the gap between my DD and her peers will widen as she gets older. When all this first started for us, I was terrified of the word autism and had no understanding of it. Now, I know a bit more about it, and I can deal with the (strong) possibility.
You know your DD better than anyone else, and it is completely your decision what you do. As everyone has said, it's not really about being pro or anti dx. It's about taking forward in the best way for your DD. All the best to you both.
Yes, although she will mimic like a parrot too, particularly if you use a hilarious intonation or sing.
she sounds like she learns visually?
She's had two pecs sessions, which I would consider to be the most helpful thing thus far aside from starting nursery. She picked it up much quicker than I thought she would, given the first speech therapist just sort of shoved a symbol in her face and expected her to do an exchange. We have two therapists there, and as she can read a fair bit, she's picking out symbols very quickly and generalising them. So even though the picture of cheese looks nothing like babybel, the only cheese she has ever eaten, she picked it out straight away and brought it to me when she wanted some cheese. This was a bit of a revelation, as she's never asked for a particular food before, just dinner or banana, which she and DS use as a word for food in general. I absolutely didn't want to do pecs, but I am really pleased with how it's worked out, and apparently we get to do colourful semantics soon, which looks fun.
Agree with jimjams too.
Has your SALT told you about PECS, or started using it?
It's certainly none if my business whether someone pursues a diagnosis or not, and really I have little opinion on the route that 'should' be taken by other families. I've never thought in terms of pro or anti dx. I found the dx helpful as everyone around me seemed unable to accept there was anything wrong, and treated me rather as if I had MSBP, the practical help we received in the early years was less useful maybe, other than the stuff we sorted ourselves.
My point is simply that lack of pointing can be very significant and while the NHS is unlikely to offer anything of much practical use I think they are doing their job highlighting it.
Imitation and learning through observation is very positive indeed. Also makes it easier to introduce things like Makaton which can kick start speech quite effectively.
you don't need to think in terms of pro or anti anything on this board, and that is its strength.
The nursery emphasise that they need extra staffing for DD because someone 'has' to sit with her during carpet time, when simply giving her a copy of the book works just as well.
That example of where she needs additional help illustrates what I mean. Without a diagnosis, the setting (nursery or school) are under no obligation to provide extra staff. Yes, they could just give her her own copy, but presumably the activity is a group activity, and I guess you'd rather she participates in that? So dx or not, she needs more help. I'd agree, if she drifts off at these times it's probably a language issue (my ds had the same at that age), but the thing is that language difficulties can easily have a knock-on effect to other areas. Eg behaviour.
Suppose what I'm driving at is that no-one here would have any views/judgement on whether you puruse a dx or not, but from our experiences, I bet there's not a single person here who doesn't wish they'd done something earlier to actually help their dc. A diagnosis doesn't make a child have (eg) ASD - the ASD does that. But dx or not, the difficulties remain.
It's not that pointing in itself is a must-have skill (though as justgettingonwithit illustrates, it is actually quite useful). It's that absence of this indicates that development is veering off-course, which is why I suspect the EP and SALT are highlighting it. Whether you teach her the skill or not isn't relevant.
Lack of it demonstrates an absence or impairment of joint attention. Needing you to read a book to her isn't the same thing - that's her requiring you as a tool. Pointing something out of interest (eg dog) is a sign of 'normal' social interaction - social being the key word.
Like lingle and others here can demonstrate, pursuing a diagnostic route isn't the point (sorry, no pun intended). The fact is, with or without further investigation/diagnosis, your dd will be who she is. The thing is whether you are able to recognise that there may be more to this than her simply being "cut from a different cookie cutter" (yes, she may well be - and all of us with dc with ASD could say the same), it's about whether her delayed/disordered development is going to cause problems without intervention.
You will certainly hate me for saying this, I suspect, and I'm not being one of those people you hate that are suggesting you pursue a diagnosis, but honestly, I think issues you raise already (eg not socialising with peers) are flags that (regardless of diagnosis) she might need additional help above and beyond what her peers require. You can do this yourself of course (and even with a diagnosis would have to do so anyway!), so dx is irrelevant - but her difficulties are not, and at 3.3 it is not too young to start - the earlier you help the better.
I agree with a lot of what you say - and sometimes the push to a diagnosis can take over from what should be the real job in the first place which is helping the child with their developmental issues. You will probably notice that a lot of people on this board feel let down by the lack of support and help after a diagnosis and that really all the knowledge they needed to help their child had to be gained through personal endeavour rather than from professionals.
DD picked up drinking from a sippy cup by herself, and from a tea cup by herself but I tend not to let her have normal cups (because DS grabs them and makes a hideous mess). She will imitate me saying things very happily, doing things (so picked up operating TV by watching us), stuff on TV (yogo in Waybuloo), our interaction with DS (will tell him to sit down if he gets off his chair at lunchtime etc), but other stuff we really struggle with, like swinging by herself (I don't know when it's normal to be able to do this).
For about six months, she really just coasted developmentally (although somehow picked up a lot of nouns and the ability to read without us noticing). She's really slow to do stuff, but will then do it perfectly once she finally does it. This is what happened with crawling and walking, nothing and then perfect ability to do it. The most recent example of this has been drawing - we had nothing but splodges and scribbles and now suddenly have faces and stick people this week, with no intervening stages whatsoever.
I think part of the difference between pro-diagnosis parents and anti-diagnosis parents might be the stage they're at. DD is atypical right now, but this doesn't present us with any problems and so we don't mind. If in three years she is still not potty trained, still won't sit in a circle and still not talking in full sentences, I suspect I might have changed my mind about diagnosis. If in three years she doesn't have any friends, I might have changed my mind. Right now, she presents perfectly normally to most people, aside from the speech delay, and I have every reason to believe this will continue so long as her language catches up.
Please don't take this an attack, because it's not meant to be, but one of the tricky things is also that for some people, any suggestion by us that an ASD diagnosis might not be the thing to push for is taken as evidence of being in denial.
There there seems to be an enormous gap between those of us that 'take a label and use it as a key to get extra support in school' (including hammering on the doors of proffs and going to enormous lengths (tribunal) to get a diagnosis) and those of us who who are avoiding the comments of other parents, teachers or proffs and insisting that our child might be a little idiosyncratic but that this is OK.
Some things that may be important - the age of the child - as they get older it is less whether you mind or whether they as autonomous people mind (eg not having friends). May be the same parent - initial rejection of diagnosis but subsequent recognition of importance as approach of secondary. Also, can your child pass as normal - if yes no-one else will ever notice and your family will suffer hugely. If no, other people - because this is about DC and the others they interact with on a daily basis and because this is proving to be practically difficult - will attempt to draw your attention to this.
If she's imitating well then I would assume a lot will follow fairly easily because she can learn from observation. If she isn't imitating then everything has to be taught hand over hand until imitation kicks in. It's why pretty much everyone - every intervention- (except the NHS) start with working on imitation.
I don't think it's necessarily significant in her communication right now, what i mean is that it is developmentally significant if a child needs to be taught to point, rather than just points by themselves. That's why 'they', the professionals, get so excited about it. They don't usually do much to try and fix it tbh (although justgettingonwithit makes a good point that it is worth working on), but it's a sign that there's a developmental disorder or delay if it's not there by 18 months. A bit like not weight bearing by 18 months, and not walking by 2. It's one of those fixed points in the developmental checklist and it's absence was really the only sign of ds1's issues when younger. I wish professionals had taken more notice of it tbh, rather than telling me he had mild language delay because he had good eye contact and was affectionate.
How's imitation? So for example did your dd need to be taught to drink from a cup or did she just do it? I didn't realise babies just drink from cups through copying until I had ds2, I thought all were taught hand over hand. I ask because for us imitation was the key to unlocking progress really. Once ds1 had learned to imitate aged 8 (taught the standard ABA way - 'do this' <clap> <hand over hand prompt> <reward> ) his development and understanding of language etc made huge gains.
I can see how pointing could be very important, I just don't agree with the significance being placed upon it right now. I'll teach the bratling to point though, I taught her to answer to her name fairly easily, so with a bit of luck pointing can be achieved using the same method (chocolate buttons).
I would like them to raise issues they think are of concern, but the bias towards diagnosis we are encountering, not to mention the out and out lying, is making me feel like DD would be better off without their 'support'. For example, DD isn't great at sitting in a circle on the carpet to listen to a story. This is partly because she still has poor receptive language I suspect, and verbal stories aren't engaging. But if someone sits with her OR gives her the same book to follow along with the teacher, then she's fine. The nursery emphasise that they need extra staffing for DD because someone 'has' to sit with her during carpet time, when simply giving her a copy of the book works just as well.
Urgh. I'll feel better after SALT tomorrow, I always do.
I know how frustrating it is when professionals seem to home in on all the things you aren't worried about, and not actually appear to be tackling the things you are seeking help with.
However, sometimes we parents want a very simple answer to a problem (in your case speech) when the problem itself needs looking at from another angle. Or multiple angles. It can seem very invasive and pointlessly time wasting.
I went to a speech therapist because my child was dribbling at 3 years, and felt extremely annoyed when therapist noted he wasn't concentrating during sessions...wtf had that got to do with his dribbling issues...(I thought at the time) And anyway, as far as I was concerned it was normal for him to be very active and not concentrate on something "boring". I felt personally insulted that she had written in her notes..."inattentive". My clever, charming son...
But I think it is the duty of professionals to notice all the relevant contextual stuff. In my son's case there were no problems with speech, the dribbling was part of a wider sensory profile, motor skills etc, although not very serious. Nothing further was picked up, as his speech was absolutely fine, and there were no other behavioural markers for ASD or communication problems. So that's an example of sleeping dogs being left to lie.
However, there were other undiagnosed issues. Eventually they did surface. He is a delightful child still. He was diagnosed with ASD (mild) but not till 8. And yet as a toddler he pointed all the time!!! I have a picture of him at 4 years vehemently pointing and shouting.
So I suppose what I'm trying to say, is that what appears to you to be normal and everyday might have a significance. And it is far better for them to "upset" you now and help, than for the wider issues to be undiagnosed. In the end he who sups with the devil must use a long spoon.
Join the discussion
Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.Register now
Already registered with Mumsnet? Log in to leave your comment or alternatively, sign in with Facebook or Google.
Please login first.