Is Anyone else staying "outside the system" for their "different" child at present?

[lingle]

Hi,

I spend hours every day thinking about and working on DS2 (3.8)'s needs and language issues. So I don't think anyone who "knows" me here would consider me to be "in denial" (ugly phrase).

But whilst "receptive language delay" is definitely "part of who he is", and I definitely feel he has "special needs" I just can't say that about ASD right now, and so I've declined to enter the diagnostic process. Which is quite a scary thing to do though the paed. and SALT were very understanding.

I know there must be thousands and thousands of parents who keep their "different" child "outside the system" including one close rl friend (who's a psychiatrist!). Most of them never see a paed. so they don't have to refuse the DX as I have. But so many of them seem to shy away from talking to other SN parents and probably would find it hard to post on this board. There are late-talker forums and I find them a bit over-determined to prove practically every child on them hasn't got autism. It's unrealistic.

Is there anyone I haven't "met" like me lurking on this board? Or who complied with the NHS diagnostic process but feels their child has been misdiagnosed?

I think everyone on this board feels like an outsider in one way or another - and this is my way of being one!

A dx has been wonderful for us. There has been ready support from the school and a current statutory assessment going on without us having to fight for anything. School is a very confusing and stressful place for children and the more help you can get in the early years the better. There is actually quite extensive research now on the affectiveness of early interventions. Imagine the affect onyour self esteem ofknowing you can't do what everyone else finds easy, but no one realising you have some difficulties. Makes me shudder to think of ds going through the system without his support.

I think nowadays the dx might have helped you to access supportgroups. You could have kept it quiet at school if you wanted to, but have been able to access maybe a social skills group or we have a group in our area for teenage girls with aspergers. It might have helped with feelings of isolation and given you coping strategies.
I think it is more helpful to think of labels as signposts. They point you in the right direction for help and as our paed said'they are not tattoed on your forehead'. My worst case scenario would be a childstruggling at school and no one recognising that they have additional needs.Because they will be labelled, it'sjust that the label will be 'naughty' or 'slow' or 'antisocial' etc.

One thing that was invaluable for us was reading The Highly Sensitive Child. It helps to get sensitivity in perspective, look at things in a positive way and gives parents tips on how to make things easier/less overwhelming for our kids.

Mumslife, My 10year old DS is like your DS,, keeps himself together at school, very hard work at home. DS2 is the opposite, makes for an "interesting" homelife.
I have actually asked the ED-p to take a look at DS1 and let me know what she thinks as he is often angry and difficult these days, but I feel wobbly about it as I know he will be very cross that i have talked about him to her.
I am in the weird position of trying to get everyone to relax a bit about DS2 and at the same time pay more attention to DS1's issues(he probably has quite a few AS traits too) luckily DS3 is NT but is acting a bit brattish sometimes as he copies his brother's stroppy manner and has also suffered from the benign neglect typical of third children (note to self must cut his toenails today!).
I have read The Highly Sensitive child, its a good book with useful stuff in but it is difficult announcing that your child is highly sensitive, people think you are a very precious parent!

If you liked the Highly Sensitive Child you'll probably like Stanley Greenspan's take on special needs

mumslife, it's by Elaine Aron. wonderful book.

Thanks saintlydame, I have his floortime book on my wishlist already but had not seen the others

I think his approach is spot on really jabber. Assessments done his way look at the child at their best as well as worst and any therapy reflects that. He provides a way to work where the diagnosis is of secondary importance to the child's functioning. That's quite rare (despite being common sense)

Mumslife, my 10 year old does not have a DX, he is very motivated to try hard at school and has always had friends at school so school have never been unduly worried about him (apart from saying they think he has more to give). He is about the middle of the class in his mainstream school, not great at spelling and took quite a while to read confidently. I think he would be OK at high school (he will go at 12 as we are in Scotland) IF we had the perfect school nearby but his good buddies are all going their separate ways, some to selective independant, some are in a different catchment etc. so I am worried about him transitioning without them (a bus journey is involved too). I suspect he will just about cope but will be very hard work at home after school, he gets very stressed about homework and fitting in etc. and takes his stress out on the rest of us. (I made the mistake of cutting his hair myself today cue operatic reaction of disgust (he then conceded i did quite a good job!).
I would like the Ed-Physch or CAMHS to cough up for some top-notch family therapy but I doubt that would happen, I will have to save up. In the mean-time we have started working through some children's CBT books "What to do when you Grumble too Much", "What to do When You Worry too Much" and the one in the same series about anger problems. I will let everyone know if they help! (sorry don't know how to do links like MrsT). I wonder how much we have all spent on books over the years?

Hi Blossom

"Lingle sorry I don't get what you mean by the paed and SALT's fixation on asd"

Yes, not my clearest post ever! sorry.

SALT paid first visit to nursery at 3.1 and saw withdrawn echolalic boy "looking" autistic. I think she "thin-sliced" it and decided there and then he had ASD.

So, here's an example of one of the many misunderstandings I have in conversation with SALT and Paed (who's only seen him twice) as a result of the conclusions they have already formed.

Me: when we're reading a story, he's telling me about an aspect of it but doesn't turn the book around when I ask him to show me.
SALT: Ah yes, you see, autistic children have no concept that other people cannot see what they are seeing.
Me: No, sorry, I mean he does not understand the verb "to show".
SALT:
Me: ok, let me explain better. He is reading me a story. He points to an element of the picture and looks at me and says "look mummy the boy's got a sad face!" I say "show me!" he looks confused. I think this is because I taught him "to show" in shops so he thinks it means "to pay". There is no shop in the story.
SALT Oh, so say "turn the book, I can't see!"

Does that give you a better flavour? So he understands all the rules on turn taking and can read every emotion on my face (he can name 6 emotions from how a face looks which considering his language level is pretty amazing) but I fear with an ASD diagnosis he would probably get "one size fits all" help with, erm, turn taking and reading facial expressions. Whereas his key weakness is that he doesn't understand what other children are saying to him....

Hi Yurtgirl,

v. intersting post about home ed. We are outside different aspects of the system! glad it is suiting you.

Anyway, you said, "I am 100% glad about the dx because I know it is appropriate for him"

If I tell you I am 90% convinced my DS2 doesn't have ASD does that explain my hesitation in having him dx'd?

If it wasn't for knowing tclanger and her story I'd probably be 95% convinced! That's why it's helpful to talk to other doubters, sceptics and waiverers.

My psychiatrist friend has a boy of 4.5 with (she says) no imaginative play whatsoever. Nil. Nada. But she has no intention of taking him to a paed. though. Instead she deferred his school start by a year as I have done for my DS2(who is in contrast quite imaginative but struggles with receptive language).

lINGLE, THE salt SAID THIS YOU SAY?

SALT: Ah yes, you see, autistic children have no concept that other people cannot see what they are seeing.

That's crap actually,utter crap.Can be true but certainly not case for every person with ASD. I'll wager she was told that on some course taken years ago and it stuck.

Another example of the pointlessness of a 'diagnosis' of some sort ( I can't even say the wrod without shuddering). Even with one, it does not achieve its purpose which is to group a section of society together.

A label is merely a paraphrase of an issue.
My kid won't do what I say.
My child has affective defiance disorder (or summat)

I don't know what is wrong with my kid
My child has been diagnosed with PDD (NOS)
(Pervasive Developmental Disorder Not Otherwise Specified)

What purpose does it all serve other than to reinforce erroneous perception that tyere are a group of 'experts' who know this stuff and whose word has a bearing on the life and support this child will have.

What tosh! Show me a paediatrician whose diagnosis has had any bearing on what goes on in a classroom run by unerpaid undertrained dogsbodies (ie 1:1 'special needs assistants-all 24 000 of them in UK) and I will eat my hat.)

I'm with Lingle - I'm probably 95% convinced DS is not on the spectrum. Obviously I am prepared to change my view should he become more withdrawn etc in the next few years and prove the assessors right, but at the moment, no way.

Also, when I look back on our parental session with the paed I just feel like she was trying to 'tick boxes' and not actually listening to what we were saying. So for example:

PAED: when he plays does he make things up or is he just copying scenes he's seen on TV?
US: Most of the time he makes things up. Occasionally - say one day out of seven - he'll reenact a scene from TV but most of the time he makes things up.
PAED: So he copies from the TV then?
US: Well yes, occasionally, but very rarely.
PAED: But he does copy from the TV.

It really felt as if the paed was trying to 'shoehorn' him into the 'right' box for a DX even though, in actual fact, it's probably not that unusual for an NT child to occasionally copy or 'act out' what they've seen on TV. Surely it's if that is ALL they do that it rings the alarm bells.

Then later on when the paed came to do his medical check DS got upset and stroppy and we had to work hard to persuade him to get on the scales/have his height checked etc etc. Paed gave us a knowing look and said 'This is typical of how he reacts?' To which I said as politely as I could, 'no, it's not typical, it's just that he's never met you before, and he's tired after completing a two hour clinical assessment as well as recovering from a heavy cold this weekend and to be honest he has probably just had enough for today.' She nodded but I felt it was just another nail in the autistic coffin...I could go on.

So we get to the feedback session and the paed just looks at us pityingly and said 'He's not shy. He just has no idea how to respond socially outside his home environment.' Part of me wanted to scream. So, every child who doesn't smile and chatter away immediately to an adult they've never met before has no idea of social interaction then? Or could it just possibly be that they're unsure of that particular adult? How does she explain that I can take him to doctor, dentist, hearing test, optician appointment etc and he is fine? OK, he might answer questions quietly and in monosyllables at first, he might not always make eye contact straight away, but he responds.

My problem is that I feel railroaded into a DX I don't necessarily agree with, and the more I reflect on the time we spent patiently answering the paed's questions the more I feel she has pretty much ignored our responses. They spent less than five hours with our child, we have spent nearly five years, and I just feel they were determined to label him come hell or high water regardless of what we as his parents actually said.

I'm also unhappy (deeply unhappy) with tendency by many professionals to pathologise normal behaviour).

It follows well from the points you make Amber.

Trouble is I suppose, a lot of people out there who really haven't a clue when things amiss with their child so professionals have to err on side of caution even with parents who are on the ball.

A similar analogy might be to official advise not to co-sleep given to all and sundry when everyone really knows it is targetting disadvanteaged demographic that get pissed, take drugs and fall asleep on the sofa with a baby.

T, that's interesting as also common phenomenen amongst people learning a foreign language.Sometimes the eye contact as well as the struggle to access semantics/morphology/syntax/intonation and all that language ential is just too much without dealing with this too!

(I konw I do it myself, as I move from country to country and always have language lessons)

Thankyou thankyou Amberflower for your last post- that is exactly the situation we are in, and you conveyed it so well.

"I'm also unhappy (deeply unhappy) with tendency by many professionals to pathologise normal behaviour)".

Moondog I think that sums it up completely. I had a follow up session with DS's reception teacher a few days after we received our verbal feedback, and she was obviously trying to make me feel better by saying things like 'well they say everyone has some element of autistic behaviour in them don't they, try not to worry about it'. Which is probably true. I mean, when I think back to the sensory profile we completed for DS, you could probably find an element of autistic behaviour for the most neurotypical of children or adult. But that doesn't mean they should be labelled.

The sad thing is that I think once professionals are involved they can be too keen to leap on EVERYTHING and see it as a sign of what they perceive to be the 'problem'. When in actual fact all children have quirks and fears, sometimes irrational, sometimes very very logical, and it's completely normal that they do.

Here is a classic example. DS's school had a mufti day last week, the first one they've had all year. So for all the reception kids a completely new experience - never been to school in anything other than uniform before. Now, I only chatted to a couple of other mums that morning because I was in a rush. But one told me that her little boy had refused to leave the house until she allowed him to take his usual school coat with him, 'just in case I'm not allowed to go out in the playground in my own cardigan mummy'. Another mum was totally frazzled because her son had had an absolute, complete and utter meltdown at the very concept of having to go to school without his uniform, had been in floods of tears because he just couldn't cope with the idea of it and she'd almost had to drag him through the gates in his 'civvies'. Both of these children are bright, happy, settled at school and most importantly patently neurotypical. But they'd been a bit freaked by the whole thing - because it was new to them.

Now had DS reacted like either of those two children, no doubt that would have been added to the 'well there you are then' list of reasons why he simply must be on the autistic spectrum.

Oh and I should add that my supposedly autistic child had no problems whatsoever with the concept of mufti day (other than saying 'it's a bit of a silly name isn't it mummy', which to be fair it is!). Happily selected a favourite pair of shorts and long-sleeved T shirt and got himself dressed, asked if he could wear his new crocs, and scooted into school as normal.

bellemaman I am so sorry you are in the same situation as we are but also reassured that we are not the only ones if that makes sense!