Who else can remember responding to others with seemingly unrelated verbatim phrases?

[lingle]

A penny has dropped - I've realised that what I did as a child is what is discussed on this board under "echolalia" or "self-stimulation" or "repeating verbatim phrases".

At, say, age 7 or 8, Child A would say something to me. I would feel nervous. The pattern and pitch of what the child said would resonate really strongly, and so would some of the individual words, especially words that I liked or didn't like or had heard in some comedy programme on tv (like a student who is reminded by everthing they hear of some phrase in a Monty Python sketch).

In my head, it was all very logical. Child A would say "A!". I would think "hmm, A - yes, like B - and C! - EEE!". And I would reply "F!" - somewhat nervously.

To which Child A would say "You're strange" or "you're funny" and I would feel sad.

Good news though is that by the time I was a teenager doing English literature, it became a fantastic skill - you can "see" and "hear" all the echos in the phrases used in sentences within long novels - you can remember the echos both within the text and with other texts.
All quite creative really . Rather lonely at the time though! I never understood why they didn't understand, that was the pity of it.

But this is yet another example of how a behaviour is treated as evidence that the child doesn't want to communicate, whereas in fact the child may be doing their level best to respond - it's just that she has processed the message differently to the way other people do.

.

Lou, first and foremost I'm really sorry to be saying anything that makes a difficult time harder, and of course you are doing the right thing to fight for the ASD dx - you are the expert, you have researched the situation and you know that this is the route that will give your child the best chance of getting the help she needs. I'm so sorry that you felt I was suggesting otherwise, really I am.

I support absolutely everything you say about your situation and your assessment of the best thing for your daughter, I particularly agree when you say "She may not have an ASD dx, but if she is behaving in an ASD manner, and the limitations she is displaying are similar to children with ASD, does it really matter whether her traits are ASD traits or any other? The net result is just the same : She struggles to understand and be understood. She becomes isolated and 'different'."

I simply couldn't agree more. I don't understand where your paediatrician is coming from. Have you been given any credible explanation? Is the paed. insisting that s/he will only accept a genetic model of autism or something like that?

As for me though, yes, you have utterly and completely misunderstood me .

In short - it's all very depressing and the grass isn't really any greener!

Oh no troublewithtalk. My comment about the grass being greener wasn't about that. In many ways it has been useful to have the dx of asd, not least for DLA, but I simply meant that things can look rosier 'over the fence'.

I envy some parents with children without a dx, because their 'packages' seem to be tailored to their individual needs (and then minus 80% of course) whereas with a dx of asd you get bog standard 'asd provision' which has been refined to ensure maximum justifaction for not much at all ( minus 80% of course). i.e. visual timetables, bloody PECS and very very low expectations.

Overall however, I think psychologically, it is in someways easier to have a dx however, because there IS a ready made package, which you challenge, but at least you have a starting place. The alternative must be a lot more confusing and frustrating.?

"I see lingle as trying to 'NTise' her DS's language difficulties, and aviod an ASD tag"

Hadn't spotted that.

You are not in a position to judge my understanding of my son's problems.

'I see lingle as trying to 'NTise' her DS's language difficulties, and aviod an ASD tag"'

Lingle Would it read better:

trying to 'make sense of her DS' language difficulties within our cultural context, and avoid an ASD tag'?

I don't know if it would. I can see Lou has a different perspective but I think she meant in in reference to her own situation rather than a statement without context. Can't speak for her though.

I must say I find your posts extremely helpful wrt giving me new angles to see DS' problems.

BTW have you seen Horse Boy? I found the film facinating, but my understanding of the 'story' doesn't seem to match others. They all look at me oddly when I say that it wasn't about the boy's journey but the journey of his parent's acceptance, and the highlighting that the problems associated with asd are not culturally universal. i.e. the best advice the top Sharman could give to his parents was to make him a good costume to fulfil his role as a Sharman, someone wise and to be respected for his differences and to make an important contribution to his community. I would be interested in your take if you've seen it!

"""I see lingle as trying to 'NTise' her DS's language difficulties, and aviod an ASD tag"

Hadn't spotted that.

You are not in a position to judge my understanding of my son's problems. "

Lingle - I apologise completely and unreservedly for the message you read. Reading your comment has made me read my comment with a different emphasis, and I can see why you feel that I am 'judging your understanding of your son's problems'.

I think this time it is me that has been misunderstood . I wasn't saying that you were trying to avoid an ASD tag when one is appropriate. Or even that you are trying to 'stick your head in the sand' to use a figure of speech.

I suppose what I meant was that I see your posts as trying to make sense of what would often been seen of as a language impairment, and you interpret it in the light of your DS's delayed/unique development. In that you seem to see it as a 'difference' rather than a 'disability'.

And I can see why. You have a track record with your DS1, that given a bit more time, the difficulties that the 'difference' or 'uniqueness' causes diminish significantly.

Myself, on the other hand; I can only see my DD1's language difficulties as an 'impairment' and a 'disability', because although she hasn't got the most limited speech/language (she is verbal, and some children aren't), in her day to day functioning, SAL is a huge barrier to her development.

Having said that, take away the SAL difficulties, and what have you got? Gross motor, fine motor...... difficulties.

Star/Total You are right. I probably don't want an ASD dx either. Just anything other than 'GDD', which seems to be a cop-out catch-all dx for 'we don't know, can't fix it, and you'll just have to get on with it'. I am not really fighting for an ASD dx, because she doesn't tick all the boxes. And certainly the Paed seems certain that she has not got an ASD. But that doesn't mean that ASD approaches wouldn't benefit her, because I think they would.

troublewithtalk even 6 hours of SALT per year would be more than DD1 has had since being on the SALT caseload in January 2009 (almost 18 months). She has had a total of 5 hours SALT in almost 18 months, and 2 hours of that was doing the Reynell DLS, on 2 occasions. So 3 hours of SALT. In 18 months. I have complained the head of Paediatric SALT, so I will see what happens.

that's ok.

no haven't seen horse boy (and probably couldn't say anything particularly intelligent about it as I know nothing about moderate to severe autism except that some of the kids who have it are very similar to my kids in very specific ways).