Here some suggested organisations that offer expert advice on SN.
Ed Psych: 'ASD traits but not enough' what else could be behind it then?(34 Posts)
Had a meeting with ed psych yesterday, she says although ds (6) shows asd traits and CAST score was over the threshold she thinks he is too sociable to be classed as ASD.
The suggestion is now that he is referred to CAMHS (we have already seen the community paed three times), our concern is if it's not ASD then what are they going to suggest as the reason for his behaviour...?
The fantasy used to work well if he was in the right frame of mind but seems to be less effective now, not sure if that's because he's getting older and less easily distracted, or he's so rarely in the right frame of mind now or we're getting less good at it. On the better days distraction does work but you have to work very hard at it, it takes real imagination and determination and sometimes you just lose the will to live!
Medication would be an absolute last resort for me, I'd have to exhaust every other intervention first.I do wish I had a side effect free magic wand though and could take all this stress away for him.
Thanks for the offer of those passport/cloud docs, I can't find them now so I will pm you with my email address.
Reward charts are a major disaster round here and just exacerbate the situation- he gets super-stressed cos he knows he's being manipulated and cannot tolerate waiting for anything! Already this morning I have had endless grief; ''when are we going on holiday? I want to go today, now. I don't want to wait. I haven't been on a holiday for two years. Milly has been on holiday 5 times. Its not fair that you're not allowing me to go on holiday. You're stopping me from going!' then ' 'when is it my birthday? I want to be seven now! All my friends are seven, why didn't you make my birthday earlier so I can be seven now! It's not fair, everyone is seven except me!' then 'carry me downstairs like a baby. Wrap me in my duvet and carry me down' I told him I couldn't cos he was too heavy for me and it would be dangerous with the duvet' he shouted at me so I just went downstairs by myself. A few minutes later he stomps into the kitchen gets a knife out of the drawer and thrusts it at me, grunting. And he'd only been up 15 mins!
Thanks for those links, I have the Understanding PDA book and it has loads of very useful info. I haven't read some of those articles you listed for a while and re-reading them has been helpful.
I had a sort of cloud diagram for PDA handling strategies and a 'person 'passport' type thing too, I'll have to look them up again for school.
I have shown the PDA info to the school in the past but not to the current head and class teacher. It was just ignored before but now it might be taken more seriously. I will get some printed out and give to them today- I'm sure they'll enjoy some weekend reading matter
I was very anxious as a child, and found it incerdibly difficult to engage with school all the way through. I remember feeling like I was in prison and being so stressed all the time. But looking around at my classmates and thinking- they obviously don't feel the same, what's wrong with them? (egocentric, lack of theory of mind). I just did the absolute bare minimum of work to keep them off my back, I hardly learnt anything really!
At school, HT seems to be implying that we need a diagnosis of ASD in order to access autism outreach support otherwise there will be no where else for school to get expert advice. The only prob with that of course is if he were to get an exclusively ASD diagnosis they might come up with all the 'wrong' strategies.
Not sure how likely ASD diagnosis is. A good case for atypical can be made but there are huge divergences- IMO he really is PDA with relatively few ASD-like characteristics ie. its not ASD causing anxiety leading to avoidance, it's PDA causing anxiety at real/imagined/anticipated demands.
ABA style does work on a very limited basis for ds but can only be used occasionally for very small, easy tasks. If he sees that a task will take 'too much' effort the withholding of a reward will send him into a frenzy. We get the indignant 'You're trying to force me to do X! GGRRRRRRR!!!!!!! (cue screaming, shouting, grunting, throwing self around wildly, throwing things, hitting out etc etc) all over something as simple and routine as cleaning teeth. The main way around all the daily tasks is for us to drop everything but the absolute essentials and to distract him whilst doing things for him e.g. tell jokes while putting his shoes on for him. It gets the job done for now but demands a lot of energy from us and how long can it go on? Will I still be telling funny stories whilst wiping his bum, cleaning his teeth and dressing him when he's 16? I hope not...
Hotheadpaisan, £800 for DK is a lot less than £3000 that Newson Centre would charge so a much more do-able option.
I am also extremely similar to my ds, and my dad is like it too so I am sure there is a very strong heritability in PDA genes!
My dilemma I suppose with the NHS is that we could push for a diagnosis of Atypical ASD but then not get it because he doesn't fit enough of the criteria, but if he did get that the strategies would be completely wrong as only PDA specific strategies work so an ASD diagnosis might be the worst case scenario. Or we could push for a diagnosis of PDA but not get it because no-one will diagnose it full stop. Or, not get it because he wouldn't display behaviours in a clinical setting. Ironically, he's usually very compliant with new people!
On top of that, we've spent the last two years doing loads of interventions (supplements, occupational therapy, social stories etc etc) which have had a really positive impact- but it makes the situation look better than it really is.
Without those interventions I know we would be in an absolutely dire situation, I doubt he would be in school at all (and I'd have had a breakdown).
In school they are beginning to really see to the core of his problems and look beyond the superficial coping strategies he employs. At first I think his intellectual ability made them think he was fine but now they are worried about him, I think mostly because they can see how low his self esteem is which of course leads everyone to think about attachment disorder, but there is no evidence for that at all. He has a very loving bond with both me and dh as well as the rest of our family and he doesn't have separation anxiety at all, just school and demands anxiety. I was one of those mothers who felt totally elated after giving birth and he was the easiest, typically passive PDA baby ever. I b/f him until he was a year old, he hardly ever cried, just sat and watched everything so intently, so life in those early days was very easy, relaxed and contented for us all- if only we could say the same now!
I have checked on our LA website and as well as having had a multi-disciplinary meeting around 6 months from our original referral we also should also have a co-ordinator to be our point of contact and who should facilitate the multi-disciplinary meeting.
It's been two years since our referral; no multi-disc meeting, no co-ordinator, no results... So much for the guidelines then.
sigh and to those EPs who think socially driven = not autistic.
If you accept the triad but use the 'unusual in intensity, scope or duration' definition rather than 'deficient in' outdated definition, then not only does that capture all the 'active but odd' children but also the PDA community.
Attachment disorder mention aside, I do have quite a bit of respect for the HT. It was down to him taking our concerns seriously that we have had the opportunity to meet with the ed psych and give her the 'low down' on ds. He presents as very sociable, but despite this he really struggles with some types of social interaction and has no empathy at all. Although he copes reasonably well while in school, the before and after school meltdowns are part of our daily routine.
He is above the threshold on the CAST and we have completed a GARS (bt not seen the results yet). In our area it is a multi-disciplinary panel which will diagnose but although it is now two years since we were first referred there has been no mention at any stage of a panel meeting so who knows how long it will all take. I know this is a marathon and not a sprint, so we just wait for the system.....
Hotheadpaisan- would daphne keen be able to diagnose PDA? And if so, how much would she charge? Also, would a private diagnosis be accepted by local authority?
Ed Pysch in our area is also ADOS trained, although dx is ultimately given or not give by the multi disciplinary panel.
There are. Our Ed psych was also a child clinical psych. She did the full assessment process, but also additional testing for ADHD etc. she clearly wasn't school based and employed by the LA though.
Ds has a dx of ADHD with aspergers traits (he has social and spd issues) but is sufficiently asynchronous enough not to qualify for dx. He also has pdd and odd traits, although this doesn't form part of his, it's just obvious. His dx does include 'anxieties and phobias' though.
Tbh, I don't think it is particularly important that a dx is specific for this type of disability, just that a dx of sorts is in place to enable support to be sought. No one yet has been able to pin down ds's particular brand of individuality. so, for the time being, ADHD with aspergers traits, anxieties and phobias, it is. (With a side helping of acknowledged but not stated everything else)
Just to add there are a few EPs with the extra training to diagnose
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