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...?
EP cannot diagnose anything medical so this person was acting outside their remit by suggesting that your son is too sociable to be on the ASD spectrum. What these people are supposed to do instead is make comment on educational needs.
Would ask GP to refer your DS to a developmental paed rather than a community paed. CAMHS certainly have their place but ASD is not always their area of expertise.
The school EP told us DD couldn't be on the ASD spectrum because she didn't mind which way we walked to school.
That's a relief then!
Our ds was diagnosed last week with asd, by camhs and he was summed up as flamboyant! He talks to everyone and anyone, sadly it's caused a lot of worry when we lost him and that he has no social awareness! Sorry to waffle but children with asd can be sociable but camhs were fantastic and it was so nice to talk to someone who didn't think we had gone mad or let our ds down! On th other hand dd is awaiting an asd assessment as she is the complete opposite and will not speak amongst other things! X
We are convinced it is PDA and that is why it doesn't fit the ASD criteria but whenever we mention it people just seem to gloss over it. The reason I am worried about CAMHS is that attachment disorder has been mentioned by the head teacher and I can't bear the thought of us being 'blamed' and interviewed to see how we have 'damaged' him. The reality is, we are extremely good, exceptionally patient parents and we both have a very strong bond with him.
ASD traits is totally meaningless as a description without a clear indication of which traits exactly are observed and their impact. Can the EP document the traits she has observed. With all due respect EP's are not qualified to diagnose and to be fair ASD is so darn complex that noone could hope to observe everything it involves in just one sitting. However the fact she HAS noticed some observable traits make it well worth asking your GP for a referral to a pead for a proper clinical assessment (ADOS is the most commonly used diagnostic tool).
I'd also query the second part of the EP's description - "not enough" for what exactly? *The law says that educational support should be based on NEED not DIAGNOSIS*- do keep that in mind.
"Autistic traits" could describe an individual who is a little quirky and socially arwkard or one like my son who needs full time ASD trained 1:1 support to cope with a school day.
My own lad is well within the clinical boundaries for 2 of the 3 legs of the infamous triad, but "only" borderline on the third. Yet in reality he's more disabled imho than his brother or father who both test within that clinical boundary required for all 3 aspects of the triad. He's also more impacted that several children I've worked with or taught who had formal Aspbergers diagnoses.
Testing more evenly across all 3 legs, can often mean a far less spikey cognitive profile in total as a result than someone without a diagnosis. Think of it like a graphic equalizer - a very low score on just one aspect of the Triad could signal the need for significant intervention and support, (and those who do have full diagnoses will still have significant variations on which areas are most impacted). Asd spectrum covers a huge ability range. His borderline status on just one leg of the Triad has caused no end of grief in negotiating the SN system over the years. I never know whether I should be relived, or distressed by the fact he has one area that's borderline NT due to the lunacy of "the system".
There is also an kind of olympic ring going on with many children where ASD is present in conjunction with other co-morbid conditions such as sensory integration disorder, dyspraxia, or ADHD. This further muddies the water. Innate personality also has an impact. DS's introverted brother doesn't want friends whereas extrovert DS is happiest when he feels part of his "pack".
My son is by nature a social extrovert who adores making friends. He just hasn't a clue how to go about it without the right support sometimes, and is frequently completely baffled by things that most people understand instinctively.
I do hope my ramble above made some sense. Your post touched a nerve methinks.
Has the pead mentioned ADOS? What diagnosis have they arrived at?
No need to say EP's have nothing to do with DX-ing as others have said it for me [can we get a 'they're fobbing you off' emoticon MN, it would save a lot of time?]
The head teacher isn't qualified to dx either so the next time s/he mentions attachment order I would give a freezing stare and say 'that's interesting, on what medical grounds are you basing your theory?'
Push for developmental pead or local specialist - our main kid's hospital had a specialist speech and language clinic but we're Scotland so everything is different.
Can you afford to see Daphne Keen?
It too years to get our ds a dx due to him being so complex. He too is very sociable and has a sense of humour. He had an ADOS test and we were told that he did not have the triad of impairments and given a dx of 'behavioural difficulties' .
We finally got a dx after several meetings with psychologist and EP who luckily both had experience of PDA. I had researched a lot though and had already thought that it might be PDA. Apparently attachment disorder and PDA can present very similarly and we were asked lots of questions about his early development so that they could rule it out. We also had a HT tell us that they had a child with very similar behaviour who had attachment disorder and knew exactly how to manage him!
A lot of professionals know very little about PDA or are just dismissive of it so you may have a bit of a battle getting a dx. Good luck.
Just to add there are a few EPs with the extra training to diagnose
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)
Ed Pysch in our area is also ADOS trained, although dx is ultimately given or not give by the multi disciplinary panel.
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?
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.
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.
DK diagnosed DS1 with an ASC with very high levels of anxiety leading to oppositional and avoidant behaviour. Throughout the report it talks about his sociability and empathy (with adults), he still has an ASC and is in constant and daily battle with himself (and others), it's exhausting for him and everyone else. He wouldn't be in school without FT 1-2-1 and can switch in an instant from being loving and caring to furious and verbally aggressive, much less physical stuff now but we've put a lot of work into that.
Very expensive, yes (£800 I think I remember) and we did get an AS diagnosis from the NHS too at about the same time. I think PDA is an ASD without a doubt, there are lots of combinations of impairments that comprise ASD, and there are lots of other similar or overlapping developmental disorders too.
I don't like AD because of the emphasis on over or under parenting, if you know you've pitched it right and your child still struggles with extreme separation anxiety then I don't think AD is good enough as a diagnosis. There is an underpinning neurological issue.
Either way, it's the strategies that matter. DS1's sociability (with adults, he's getting better with pesky, unpredictable kids) throws everyone until they see his extremes of behaviour. He is not a gifted child as some with AS are either, he resists or won't allow himself to believe what he is taught and can't read yet (he is nearly 7) but I know he's cognitively able and he will get there when he's ready. Verbally it's like talking to an adult. Which isn't right or typical development either, as I keep pointing out to people.
I am glad I've got the report because it explains him for my benefit, the extremely fragile ego, the inability to trust his interpretations and reactions, his ability to speak well but not comprehend cause and effect, the lability of mood, I could go on.
Good luck, keep on going on about PDA until someone listens but my advice is to push for the strategies and an ASD diagnosis anyway. DS1's behaviour was, and still can be, so extreme that substantial support was granted at the first time of asking. He's an absolute enigma, except to me, we're very similar.
Ah, yes, intensity, DS1 has targeted and obsessed over particular children in the past, less so now but it wasn't good.
DK is a very well-respected NHS clinician, they should not dismiss her findings. She absolutely predicted how school would go for him in her report, it was quite uncanny. Best thing we ever did was see her, I still read the six page report all this time later to remind myself of bits and bobs that explain what he does and why.
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!
Very similar babyhood to S1. I think DK got it right for S1, it is ASD with demand avoidance featuring heavily. She really said a lot more too, it all made sense. She also talks about how this is a rare but well recognised subgroup of children, and talked about his unusually severe behaviour profile, it really helped to see it all written down.
I don't remember a lot about the anxiety-led need for control (although the behaviour section is this really), but Schramm helped with that, and she certainly explained his anxiety and self-awareness well.
Interestingly she recommended ABA in order to help get him in to and help him in school. We didn't do anything formal but school have adopted a task/reward approach (FT 1-2-1) which means he is starting to learn some things.
We are going to look to medication for the anxiety though. CBT, managing demands and PDA strategies help but I think we have to intercept or take the edge of the anxiety. I don't remember being anxious as a kid, and I never had the level of intrusive thoughts he does, or at least I don't remember. Also, I wanted positive attention so I complied for that to an extent and I wasn't as aggressive or distraught when things went wrong.
I completely stopped going to many lessons as I got older though, anything I didn't have any interest in, and that's a pattern I expect him to follow, not sure how I got away with it.
Ironically, he's usually very compliant with new people! - ah, yes, the novelty factor, S1 lulls them into a false sense of security.
The NHS paed was quite happy to concur with DK, although the NHS paed had already formed an opinion on HFASD/AS from all the reports.
Have you shown school the PDA info? What do they say? AD such an odd one to come up with as the history just doesn't back it up.
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...
I just keep in mind that PDA is an ASD. Here's my obligatory list of gubbins in case you haven't seen it before. Would you consider anti-anxiety medication for him?
Info from NAS about PDA
Understanding PDA - great strategies for helping children who struggle with high anxiety due to everyday demands which results in obsessive, controlling behaviour and angry outbursts
What is PDA?
Diagnostic criteria/background info
PDA Education and handling
PDA parent group - excellent info and current advice, not as fast moving as the Mumsnet Special Needs forum but some very experienced parents on there
Motivation and Reinforcement by Schramm (2011 Edition) - very good on why some children are so controlling, explains it all really well
Huebner's book What to Do When You Worry Too Much is very good on anxiety and practical strategies for ages 6-12, there are others in the series on sleep, anger, OCD, negativity and bad habits
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.
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