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!

< small incursion - hi jabberwocky! All is well here. Are you and your little one ok?>

Pan! HI

I hoped you would find this thread and share your experiences with your dd. We are doing well. Ds1 has started socializing much more these last few months and I am so proud of him. How are things with you and your dd?

Good for you!
Well, not so easy. dd still gives me a cause for concern - she is 9 now, and still exhibits a degree of introspection that worries me. I am often not sure about how to proceed, other than lavishing her with adoration! She stands back too often, as we accept, but I worry still about longer term consequences. Still, she is bright and engaging at times, but then 'disappears'.

I am realising that she will need a longer term investment in things that other children won't need. A nephew of mine is on the autism spectrum, and a very long term friend ahs a Downs child, so I do see the energy and stamina involved, which is fine. The problem to me seems to be a sort of reluctance of others, incl. mum, to account for her 'specialness'. She is seen as 'shy' or just uncommunicative, whereas I know she is struggling with a sense of being/feeling overwhelmed.

late here, and sleep time. Lovely to check in with you. Hope to see you around again. take care.

It is exhausting sometimes, I know. FWIW, I went back for more training about 2 years ago so that I could do vision therapy on ds1. It took until January for me to find a place to set up a therapy room and we have working in ernest for about 8 weeks. I really have noticed a difference! If it's something that interests you a behavioral optometrist could do an eval. I think the BABO website has listings of members based on location. The theory is that they can be hesitant of their surrounding b/c of a visual-spatial mismatch. Chipmonkey is also doing this - she is in Ireland.

Gah, how annoying!
I have it saved as attachment to an email (in pdf) but have no idea how to link that so it shows up herar.

I don't agree with everything the chap says, but as a searing indictment of a 'system' in which there is an inexorable rise in labeliing and diagnosing combined with less and less accountabilty and intervention of any substance,it can't be faulted.

It's from Centre for Policy Studies.
They have some cracking articles.

Pan - obviously I couldn't begin to speculate whether your DD is just "shy" or has any particular diagnosable issues - but you might find it useful to look at posts by a couple of ladies on here who are adults diagnosed with Aspergers, see if any of their sensory/social problems ring a bell (am thinking particularly of Amber and Bullet123), I know Amber has done a "Day in the life of Amber thread". Also Martian in the Playground by Clare Sainsbury might be useful (lots from child/teen perspective about difficulties of kids with ASD in the school system). Also Out of Synch Child by Carol Kranowitz is also meant to be good on sensory issues.

Lingle/Starlight - makes you wonder whether these people get training to say "it's very hard for you" as some sort of box ticking exercise to show empathy!

Interestingly every professional I have dealt with has shied away from the very mention of ASD - the closest anyone has come voluntarily is a vague mention of social communication - I am always the one that point blank raises ASD as an issue! It's as if if they aren't about to issue a DX they don't want to frighten the parents...

Pan, I can relate to that! My son is engaging and lovely and there's nothing to see physically, so people expect him to behave 'normally'. I'm often offered behaviour modification advice that simply isn't relevant to him; people are quick to judge but slow to make concessions. I don't necessarily want him labelled or categorised (I'm a tired lay person and I often simply don't know what to do for the best) but without a label people are quick to think that certain behaviour is borne of parental inadequacy or otherwise somehow his 'fault'. It's a dilemma.

Starlight - have you bought "More than Words" and "It takes two to talk?"

They are "only" naturalistic therapy books but I think that by absorbing them adn their principles (many of which you will already be following) you may feel that you have "done" something.