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!!
Firstly I love the phrase cookie cutter children! Fab!
With regards to pointing I haven't much advice except my dd1 didn't point until around age 3.5 but as a firstborn I didn't think anything of it. She's 8.5 now and does point but cannot follow a point. She has a dx of ADHD. The pointing has never really hindered her - but it annoys the life out of me!
i'm a bit confused by your OP here, if you're not bothered about her having or not having a diagnosis, why are you going to all these appts?
I think what they are getting at is shared attention - young children typically do a lot of pointing to show an adult what they are interested in, this continues even when they are verbal but may get less as they are more confident about using everyday verbal language to pester the adult. Young children also typically follow a point that an adult makes because they want to involved in everything the adult is doing. Pointing per se is not the big deal, it's what it is used to facilitate - the shared attention that allows NT children to develop language and other skills so rapidly.
It does as though your dd is making loads of progress though so there is a lot to work with
does sound as though - I meant to say
yes, willow i think that's correct about the pointing
it's one of the 1st forms of communication for NT children
Been there, done that, remember the triumphant air, though personally I found the sympathetic look harder.
Don't advocate, demonstrate. I only got my paed. to leave her prewritten script and start listening when I demonstrated all the brilliant things I was doing to help DS. The timetimer (www.timetimer.com I think) blew her away, as did the calendar (thank you moondog). I declined formal assessment but I got the ideas from this board talking to......people who were desperate to get ASDdx s for their kids, or already had them!
It's obvious that you are working hard to help your dd. These professionals have slightly lost sight of that so they are fighting the wrong battle (a battle with you). Try to remember that they deal with lots of parents who aren't doing the things you do, and also that they are only human. The teacher may lack confidence. Our school was great, and the head and nursery nurse had confidence in their expertise as the secondary experts in my child, and as being qualified to take or not take the advice of outside specialists as they and I saw fit. Try finding neutral ground with the profs. by asking their advice about very specific activities you do with your daughter - show them a video and ask for a critique.
Autism is not one thing (thanks jj) so it goes without saying that the criteria for an ASD diagnosis will be less satisfactory than the criteria for a diagnosis of, say, measles. For me, that mattered a lot. For most people on this board it's better to take a label and use it as a key to get extra support in school.
As for pointing, pointing is about one's ability to show and be shown stuff, first in simple ways, then in more complicated ways. That's why you don't teach pointing (the lovely Hanen people say this so it must be true) and that's also why professionals worry when children aren't doing it - it's a sign that they are finding it harder than they should do for their age to communicate.
As for not being cookie cutter, again, been there, done that, got the child, declined the dx. But the issue for a child like mine (and perhaps yours) is that by three their communication difficulties may prevent them from having experiences that other children are already having - it's as simple as that really. "Shyness is nice, but shyness can stop you from doing all the things in life you'd like to" (as the great man said). That's why we step in.
We're going to the appointments because we do want speech therapy and some assistance for her at nursery -the only way to get extra support at nursery is to meet with the EP (which we have done once). The only way to get speech therapy is to meet with SALT, and we had an assessment, and four completely unhelpful appointments before we finally got onto something which seemed to be useful and actually 'therapy' as opposed to observation and being rude about my parenting/my house/my other child. Opthamology is because she had a smidgeon of a squint as a bubba, and Audiology is because I have a hearing loss and I want to make sure she doesn't. I have however refused an appointment with a developmental paediatrician, social services and several health visitors. All I ever wanted was some help with her speech and a hearing test. Six months later, I still don't have a hearing test. Our GP looked at her ears and said they looked fine. WTF?
So basically the lack of pointing is considered symptomatic of a lack of shared attention? Which in turn hinders her speech and social development? DS is generally held up to me as a paradigm of NT development (which for the avoidance of doubt, I find extremely irritating and really wish people wouldnt do) and he follows a point nicely, but I dont see him pointing at stuff especially? If he wants me to be interested in things, he brings them to me or takes me to them, which is exactly what DD has always done.
I still find it confusing DD doesnt want me to join in with her Little People play for example, but has always wanted my input on books, pictures, the alphabet, singing etc Is this not shared attention? Is it the wrong kind of shared attention? If I point at something and say Look DD she will look, if she sees something exciting she will tell me what it is.
Cross-posted - we asked for speech therapy because we were concerned she would get lost at nursery if she couldn't communicate her needs. TBH, starting nursery has brought her speech and communication on massively, as well as her playing with DS. I don't think she's shy. She can be apprehensive in large groups of people, or with new people, but she dials in pretty quickly. She certainly actively dislikes a couple of people, the first speechie and our large beardy friend for example. She has a sort of general disinterest in other children, which I find really quite familiar from my school days, hence the lack of worry about it. If, by the end of her first year at nursery, she hasn't picked up a special friend or two, I'll worry a bit more, but at the moment the tendency of the nursery staff to baby her (because she's tiny and adorable and redunkulously cuddly with adults) doesn't help her socialise with the other three year olds.
And yes the sympathetic 'I have two daughters on the spectrum and I know how hard it can be, so do call if you want to talk about it' made me want simultaneously want to cry and shout.
I'm not saying this to make a direct comparison as your dd sounds different in other ways but ds1 was very demanding of our attention to point at things in books and to have them named (for hours and hours!) . He was even thought 'advanced' by some because of his (apparently) amazing knowledge of all types of animals, vehicles, planets etc - but these some were people who knew little about him or about child development. We still had significant concerns as he was well over 2 with no verbal language.
I think NHS Speech Therapy is much as you describe above for all of us and getting beyond the assessments and the odd/rude comments can be challenging. But hopefully the Ed Psych will at least recommend some support in nursery and as you say, that's their main purpose - to gatekeep these resources.
It's strange about the hearing test - as this really should be the first thing to rule in or out.
Pointing really is quite important. Or rather an inability to point is, as it's indicative of joint attention. TBH ds1 always showed joint attention (he would see an airplane say 'ee hee' then look at me then back at the airplane. However, he didn't point. He had good eye contact, (still does), sense of humour, affectionate, but didn't point, nor could he follow a point. And in his case I would say it was the key sign when he was younger that there was a developmental issue.
Of course most children learn to point, as did he, eventually, although he still tends to use his whole hand or the wrong finger. I would say that not pointing by 18(ish) months IS a big red flag that there are developmental issues. It doesn't tell you about developmental trajectory or prognosis, nor does it diagnose, but it is a big fat warning sign to be honest.
An ASD diagnosis can be very helpful at school and later on if you end up needing more support. What it doesn't do is open doors to an individual approach (which is often what is needed indeed, and can exclude children from some approaches that might be helpful) but it can make it easier to secure extra funding/support that is a first step.
I'd go back to the beginning and demand a hearing test, and make sure it is the one that is appropriate for her level of receptive language before you put her through it (bad memories of inappropriate test here). Nice new speech therapist should be able to advise.
sorry for cryptic shyness reference - "communication difficulties can stop you from doing all the things in life you'd like to" is how it should go.....
it is all very irritating isn't it?
I can only tell you that an ASD 18yr old who still doesn't point, (despite attempts to train) and gets enraged when no one knows what that, over there!!! is, that hes neither pointing to, nor describing, or follow the trajectory of a pointed finger easily in order to see where youre indicating, and getting more and more frustrated by it, is a hard place to be for all. (Especially the physically disabled)
If he can be convinced to get over his frustration and point for your benefit, his ability to even vaguely line his finger up with where he wants you to look, is very poor, leading to more unhappiness, and problems interacting with the world, so I wouldn't dismiss it out of hand, as its something that may matter.
By the time d/s was diagnosed so much damage had been done. He might still not have got help, but without it people were free to theorise about his differences and how to 'cure' him of them. It would have protected from some of what was done to him and me.
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.
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 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.
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.
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.
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.
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.
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.
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.
you don't need to think in terms of pro or anti anything on this board, and that is its strength.
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.