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!

LOL@ worrying about ice caps, super volcanoes and bees

Mrst - I believe you have observed in the past that severely autistic children with good contact and naturally "affectionate" (as NT people see affectionate) personalities often have a very language-driven autism ie they are non-verbal at 5years +.

This ties in with me with the experience of seeing social difficulties fade as language is acquired in my children's fourth years.

I am aware that DS2 would be in a very different place socially by now (3.8) had he not "grasped" choices at 3.1.

Cory, I think you describe the labels point very well.

Clearly, for people on this thread who are not having any real problems with their child at home and whose child is not behaving inappropriately at school, that doesn't apply so the label issue is a real problem for them. Withdrawn behaviour may give way to a crescendo of behavioural problems but it may equally give way to increased sociability. But an ASD label is for life, not just for the withdrawn 2s,3s and 4s. And it contains the word "autistic" which (and here I'm going to actually post instead of typing and deleting) conveys to the average non-specialist but reasonably well-educated person the notion that the labelled person has and always will have fundamental struggles in forming and maintaining responsible loving relationships. I'm not saying the average person is right, I'm saying this is what the word conveys. The average person is not on this board. So that's a hell of a thing to let people think about your child even if you have paediatricians assuring you it's not how doctors think.

Basementbear, yes, I think it is correct that the school has an agenda to get the extra funding. This is a point that a friend who's been acting head of a primary school made to me. Before that I'd been looking at the teachers as somehow objective dispassionate arbiters of need (which is ironic as I refuse to see doctors that way!)

Interesting lingle. Quite a few people have said to me over the years a version of 'if ds1 could talk he would be fine'. Now that's obviously not true, he would have many problems still, but I think they're identifying with his most severe problem being lack of language. We have a new person working with us - and she has said he has totally blown away all her preconceptions of autism (she's a psychology grad but no hands on experience). And yet I do think he's severely autistic. I just think the day to day lived nature of autism is not understood. Because in part of it's assessment in clinical settings.

lingle in your response to Cory you have just summed up EXACTLY what I feel, and fear. Withdrawn and subdued is probably how I would describe DS at school (I have witnessed it) - as you say this could in future give way to additional problems - it could, equally, improve.

My major issue is the 'stigma' attached to autism for the population as a whole (I don't think it's right that the disorder is stigmatised like this but to be frank, it is) and I simply don't want DS 'stigmatised' or for people to make assumptions about him that may be wildly inaccurate. That is why I object to the 'label' in our case.

"And secondly the verbal feedback from the paed didn't quite 'make sense' if you know what I mean."

Agree. Astonishing. In fact it's getting me angry so I need to stop posting. You have been placed in an invidious position. Could you make a direct formal request for the therapies without the ASD diagnosis?

Do you consider his July birthday to be a significant factor here?

lingle - personally, yes, I do think the July birthday is a factor. As I think the fact that he is our first, and currently (I'm 17 weeks pregnant) our only child has had an impact on how confident/sociable he has been entering the school system. Inevitably, I think a child who turned 5 in the autumn and has, say, older siblings, is going to be in a very different place socially to an only child who was only just over 4 when he started reception.

It is probably also worth noting that we struggled to conceive a second child for 3 years, finally achieving success with IVF earlier this year, which I am sure has had a bearing on how we parent him if that makes sense - I'm sure there have been times when I have 'babied' him because I was so distressed at my failure to have a second.

I did mention this to the paed and she said well the summer birthday has definitely not helped but had he been born 2 months later (i.e. not gone to school till this September) I think you would still have seen some issues to some extent. It's the fact that she seemed to be suggesting that DS could 'grow out of' autism that seems to fly in the face of everything I understand about it (and I have read up a fair amount). Surely he either is, or he isn't! (And for the record, my instinct as his mother is that he isn't. In my 'heart of hearts' I don't feel he is 'wired' any differently).

I am due to meet with his teacher, SENCO and head once we have the formal report through so I will see what this meeting gleans.

Thank you so much for starting this thread, though. Simply reading through and participating in it has made me feel so much better and less isolated.

Lingle...yes. i knew in my heart that something wasn't right.I can remember thinking (when he was about 4) 'i don't get my child...i don't understand how his brain works'. Then i had dd when he was 5 1/2 and i can remember noticing 'theory of mind' in her when she was about 6 months old (amongst about a hundred different things that he never did) and thats when i knew for sure. It took me ages to convince everyone else.And then the school started giving him other labels and giving him a hard time. That was what made me seek a dx in the end.I sought the label for 'protection' for him...without realising what a help it would be too (for both of us).
Sorry...just to clarify...he could pass as nt at 5 or 6...By 8 he couldn't ...and now even more so. You only have to look/be with him for a little while now to notice he is not like an nt 12 year old. He withdraws himself from most interactions going on around him (not interested). He is very quiet and withdrawn.He also has no idea of how he looks and behaves (from someone elses point of view). Therefore he moves and holds himself without an advanced level of self awareness. So you can tell from the way he moves even. Other symptoms which i didn't think he fitted have become more evident too.
Lingle...i think you are doing the right thing with your boy...and all that any of us do really. We respond as we see fit and do our best in any given situation...and keep updating that. At the moment you have found a situation that works and is right for you boy.
Your posts are really valuable on the board btw (look at this thread!)...no need to feel like a outsider.

Blimey i should preview more. Here is a version you can actually read

Lingle...yes. i knew in my heart that something wasn't right.I can remember thinking (when he was about 4) 'i don't get my child...i don't understand how his brain works'. Then i had dd when he was 5 1/2 and i can remember noticing 'theory of mind' in her when she was about 6 months old (amongst about a hundred different things that he never did) and thats when i knew for sure.

It took me ages to convince everyone else.And then the school started giving him other labels and giving him a hard time. That was what made me seek a dx in the end.I sought the label for 'protection' for him...without realising what a help it would be too (for both of us).

Sorry...just to clarify...he could pass as nt at 5 or 6...By 8 he couldn't ...and now even more so. You only have to look/be with him for a little while now to notice he is not like an nt 12 year old.
He withdraws himself from most interactions going on around him (not interested). He is very quiet and withdrawn.He also has no idea of how he looks and behaves (from someone elses point of view). Therefore he moves and holds himself without an advanced level of self awareness. So you can tell from the way he moves even.
Other symptoms which i didn't think he fitted have become more evident too.

Lingle...i think you are doing the right thing with your boy...and all that any of us do really. We respond as we see fit and do our best in any given situation...and keep updating that. At the moment you have found a situation that works and is right for you boy.

Your posts are really valuable on the board btw (look at this thread!)...no need to feel like a outsider.

Thanks Troutpout, I think that post will assist many people.

It has taken me a year to pluck up the courage to address this issue head on. I was always too scared of hurting people's feelings.

It was the recent threads decrying a "sanitised" view of autism that helped me pluck up courage.

MrsTurnip,

As I understand your various posts, you are quite sure that your DS will always continue to process the world using different sensory paths now even if he comes to be adept at language? But perhaps at two he was extremely similar to my kids (certainly sounds like it) and a small fork in the pathways led them in different directions?

The medical model is only partly appropriate for dealing with these developmental problems, that much is clear. Doctors are scientifically trained and believe themselves objective. The clinical setting and the use of stranger clinicians in the home mean however that much of the time they are quite simply gathering the wrong data.

In other less "privileged" scientific areas, such as ape language studies, this would not be left unchallenged. Whole conferences on ape language revolve around debates as to whether data obtained from a captive bred ape who is "signing" can have any credibility whatsoever compared with the harder-to-gather and more fragile evidence obtained in the field (ie Africa).

PS, am not comparising anyone's kids to apes except mine who are definitely both bonobos .

Riven,

Your story of your children's very different levels of SN came into my mind when I was in the paed's office being told I ought to find my life "hard".

She.

Guided by moondog's exhortations to be honest, I "confessed all". Listed every difficulty with DS2. Briefly they are: receptive language delay (like a 2.5 year old at 3.9 so I'm deferring reception for a year); still quite withdrawn at nursery; some level of visual sensory issues; a dislike of new clothes/haircuts - changes that directly impinge on his body, basically.

She congratulated me as if I was a genius for coming up with ideas for getting him used to wearing shorts before our holiday in Greece in two weeks' time. Then said: "most mothers would find parenting a child like DS2 really hard. It's clear that DS2 is different".

Doesn't even begin to qualify as "hard" in my book.

Lingle I often find i can relate to your posts.

Last week We had a home visit from the ED-P to discuss with DH and i whether to have DS2 assessed for AS, we have declined up to now (and it has now been put off for another year). It is a strong possibility that DS2 does have AS but like Amberflower's Paed my instinct is that it is possible to grow out of mild AS, by that i mean people can cross the line dividing AS from what i call "Asperger's type personality" (A category several members of our families could fall into). Using a language analogy i feel that DS2 is a bit like someone who speaks English as a second language rather than a native speaker, he may take a while to catch up with his peers (he is also the youngest in his class) and end up with a slight "accent" but i think he will be fluent enough to not be significantly held back.
My problem with the "system" is its negativity and lack of customization, it is a real downer when professionals belittle progress; I was telling the Ed-P about DS2 using idiomatic language and displaying theory of mind to which she replied "But he has had to learn that", so he has to learn it rather pick it up without thinking, but he taught himself and is getting fluent.
I have had bad experiences of social skills classes run by SALTs as well, DS2 is not going to pick up social skills in a grotty room with several shy boys from totally different social backgrounds and interests "helped" by slightly bossy women with a sense of humour bypass.
DS2 does much better with activities he chooses himself like his drama class.
At the moment the tactic they are employing is to scare me with talk of how awful high school could be without a DX, whilst at the same time saying that you shouldn't need a DX to get help. They also mention "adult services" ominously, there is very little chance of DS2 needing them IMO.
What I want them to say, I suppose, is "OK DS2 is a bit unusual, but he is fab and with a supportive family behind him he will be fine and in the mean time if there is any specific help or resources, or even some advice over the phone, you need please ask". Review meeting are usually a waste of time.
Mumsnet has helped me more than anything else.

reading all your posts, it's obvious that the main problem with "The System" is this whole one-size-fits-all approach. makes sense to keep your child out of it if you think his/her needs can be met anyway

pmsl at wiggly's description of the social skills class

snort wigglybeezer. your description does remind me of the SLT group DS did last summer! we had the joys of good listening apparently included crossed legs and reading "where's spot".