Executive function - how can a child be supported without an asd dx?

[magso]

My son has very poor executive function, but doesnt have a full dx of asd because he makes good eye contact and wants to have social contact - all be it very much on his terms. He is now in a combined MLD/ASD school so gets full support at last, but I worry about the transfer to secondary only 3 years away. He is not able enough for a dx of AS.
Having a dx of ASD traits with ADHD and language disorder got him minimal support in MS, until he was more than 4 years behind his peers, when after a long fight we got a statement and a school transfer. There is no combined facility at secondary - only asd units in MLD which are oversubscribed and not available to children without a full asd dx.
Is this a common problem?
My son has many quite severe autistic traits (inflexibilty, language delayed, repetative quercky behaviour and obsessions, which are in tha main not deliberate or intensionally naughty but caused all sorts of problems and punishments in ms.
Will an MLD secondary understand or should I push for further assessment?

Severely autistic ds1 (non-verbal) has good eye contact and seeks out social contact. I;d push for dx.

Yurt thank you, that is interesting. I have often thought our sons have similarities in some ways from what you have written! Ds is actually very likely to make eye contact with a new face such as a new doctor- he has a smashing smile all the wider for a new (slightly worrying) situation. He can immitate now, but has had to be taught. We have our long awaited appoint with CAMHS in a few weeks. It has been a very long wait (more than 3 years) and I am so worried they will try and blame us or his difficult start to life as usual. I know my DH (who is coming) will minimise everything.

My understanding is that you can be borderline on one of the three aspects of the triad but still be diagnosed ASD - in fact, I know that's true because when my DS was diagnosed, he was borderline on the obsessive / repetitive bit but very high on the social and language ones. So even if your DS is pretty good socially, he is still a little impaired from what you say and his language and reptitive/obsessional aspects are ASD-like. I would push for a dx to fit the school you want, as that's the game we all have to play. Can you go private and go to this great Doc we saw originally - Dr Daphne Keen, who does speedy private diagnoses but is also a big cheese in the NHS (so no-one can poo-poo her diagnosis). For special cases like your DS, you need someone with a big brain to understand that autism comes in as many different shapes and sizes as do NF children - Dr Daphne was that kind of person, plus she understands the "game" we all have to play. It cost us £1000, but you can get it back on BUPA if you or close family member have it?

AMAM , thankyou. Actually that is a good idea- she is London based if I remember from a previous post which for a one off would be fine. I have little faith in local NHS services so if we get nowhere with CAMHS it may be the way forward. In my head I know Ds would benefit from a full ASD label - and frankly in our county we will always struggle without it. Ds loves attention but other children are not as keen on DS - he has no real understanding of others needs or differences!

Does a school and an LEA HAVE TO RECOGNISE AND ACCOMODATE A PRIVATE dx?

Bad typing skills there!

I dont think so - we had a private physchology report done to get the statement assessment done (it showed centiles within the definition of SLD and very poor executive skills). It made them sit up and listen and do the assessment but they actually ignored the figures in the report and went on the county edphysch report that was much less detailed.
Perhaps we'll just to move!!

Don't know if it would be worth £1000 then. Would be interested in doing this for my ds.

I found that the Daphne Keen diagnosis was taken quite seriously, and when I finally got to the top of the waiting list for an NHS diagnosis, the paed pretty much just took half hour to chat to me and rubber stamp the private diagnosis (rather than put DS through weeks of tests etc). I think she is pretty eminent, so it would be hard to argue with it, but I can't say for sure what would have happened if I had never got the NHS woman also to rubber stamp it. In any event, you'd at least know for sure what someone who knows about autism actually thinks, rather than always suspecting that NHS paeds are dressing up diagnoses to meet LEA budget needs, eg not callling it autism but calling it PDD cos then you don't have so much pressure to give a statement.

sO HOW LONG DOES IT TAKE? We would have to travel - could dhe do it in a day?

I looked at the website and it said appointments were 2 hours, but that other assessments like OT/SALT etc may be required. How long did did your appointment with D. Keen take for you AMAM? Ds has attended community paed for 5 years (at least 20 mins at least twice a year), and hasn't had any formal testing except wt/ht. We did a conners scale at rising 5.
Paed read private phychologist report, hence chasing CAMHS appontment and suggesting DLA.

DH has private health insurance but it has so many exclusions (psychiatric assessment being one!) we have never been able to use it! However Dr Keen is a paediatrician primarily so I will look into it!

My Daphne Keen appointment took about 1 1/2 hours. And Magso my DH's BUPA won't cover anything further now DS is diagnosed autistic, but they would cover the original meeting with Dr Keen as it was exploratory - you could say it is a behavioural and health assessemnt as well (eg does your DC have bowel issues too, like my son as then you could bring that in as well)?

Thanks AMAM (I can't call you ancient! even if you feel like it sometimes!) Will discuss with DH.

just a word of caution about Dr Keen - she does have a bee in her bonnet about ASD and like other drs will view children through the prism of her own specialty - she diagnosed ds2 as having ASD when he was 4, completely ignoring the fact that he was severely constipated - hey presto, once the constipation was sorted out, most of the 'autistic' behaviours disappeared too ... he's still got the label though although the only things which cause him problems at school are his fine motor skills problems and a tendency to take everything annoyingly literally