advice from those who remember our history

[bochead]

DS got a 30 page assessment report back in September, however does anyone know if school & other profs ever bother read those things? Just got a copy of a one page letter the consultant has sent to my new GP and am wondering whether to ask school to keep it on file.

"Diagoses

1. Social Communication Difficulties (Broader phenotype - Autism Spectrum Disorder). does DS now "qualify" as ASD in terms of support services?
2. Sensory Integration and motor coordination difficulties.
3. Sleep Maintenance Difficulties."

No other paperwork states this so clearly (despite a box full of the stuff lol!).

I have a couple of other questions concerning the letter -

1. I asked back in Novemeber at annual review for OT to be added to DS's statement and so far have heard zilch back - who do I chase, school or LA?
2. The letter also mentions social services disability team in relation to home saftey equipment for DS's sleepwalking. I do need a decent stairgate, capable of taking Ds's weight (5 stone) BUT this is stuff I already asked for and was denied under a CP investigation 2 years ago. I really don't want anything to do with SS after they were so nasty last time, (I'm really worried they'll upset DS). Does this letter mean they'll deffo get in touch and can I tell em to fook off to the far side of fook if they do, or will I get myself into hot water?

Not sure Bochead, but IME letters from consultants seemed to be ignored by other services. My DS's paed recommended OT, but we never got it. And I was too naive in those days to even know what it was and not bolshy enough to chase it up.

SS disability team are a different branch to the CP lot, though, and may be more useful than a chocolate teapot.

My DS's DX letter is just a one pager to the GP copied to me. It's the only written DX I've got. I'd copy it to the school as it does state ASD and might make you eligible for any specific ASD support you have locally.

Right I'll just chase up OT then and leave SS to their own devices. Nowadays it's the sensory and coordination issues that cause the major issues at school.

If SS weren't interested in helping when he was unable to attend school and suicidal I can't see them rushing round to help now he's doing alright. If they do turn up I'll just have to tell em straight that they traumatised DS last time round and hell will freeze over before I let them do it to him again.

Will give a copy of the letter to the school just in case they/I find it handy later on. From the sounds of it, I need to make a spare copy for my own files too.

Ok Boc here goes - contact consultant and see if referral to OT has been made. If it has then contact OT and push them for an observation in the home, school, clinic wherever you feel is necessary. Write down all your OT issues and tell them this - if they are like my borough they will not mentione the sensory stuff and try and focus on the physical side. Don't drop the sensory stuff as it also impacts the physical side. My OT used to work in your borough and I know they have an ASD specific team (although that could have changed with the cuts and your health trust being in administration). If the OT stuff hasn't been added to statement tell them you need a report for the statement and request an early review if necessary.
As to SS ignore until they contact you. Also I don't know if anyone else feels the same but I didn't feel the consultants letter definitively said ASD, I felt it read more like ASD traits - but that may be just me???

You may be right, frizzcat. Social communication difficulties, sensory integration and motor coordination may only meet parts of the triad. School may not realise that, though?

Cheers Ellen
Boc - just get that cleared up when you speak to the consultant it may be that another letter needs to be issued - of the school or other agencies try and argue the dx ...

*if

I don't know the background to this boc and I don't know what a phenotype is but social communication difficulties is not an ASD dx. DS dx is social communication disorder or delay and they were very clear with us after the ADOS that he wasn't on the spectrum. Nudging it, but just below it is how it was described to us. Don't know if that helps or not?

Having had a quick google, unfortunately I think frizz is right, that the reference to the phenotype probably means the consultant has dx'd ASD traits rather than ASD.

In terms of the assessment report - human nature being human nature, I imagine that people would read the first and last paras and at best skim the other pages.

Agree with chasing OT and lying low re:SS. If SS bother to follow up just on basis of paed corresp, hopefully that's a good sign that they intend to be helpful this time round.

"The term broad autism phenotype describes an even wider range of individuals who exhibit problems with personality, language and social-behavioral characteristics at a level that is considered to be higher than average but lower than is diagnosable with autism." Here

I know DS scored well within the boundaries of 2 parts of the triad on ADOS for autism but was on the clinical borderline for the 3rd aspect.

I think you guys are right, it isn't a "full diagnosis", in which case I won't share it with the LA/school. No point in giving them the ammunition they need to take away his support. My town hall takes the tick box approach to support iykwim, can't tick the appropriate box - then you can go away and rot.

Shame as I was hoping to aim for an ASD unit for secondary (no way he'll cope in a comprehensive environment). He may even need alternative provision next September as his current school is doubling in size. I'm hoping decent OT input can fend that off.

Boc - OT can make recommendation for specialist provision and as ds needs come under their umbrella it would carry significant weight - so get the observation done at school, explain your concerns so they keep his file open and under review. In this borough then tend to close files after strategies have been given and the you need a new referral.

Which aspect was he borderline for? Am just wondering if a bit of supplementary information might make him 'diagnosable'. Personally, if a dc is autistic enough for an ASD unit to be the right environment, I'd struggle to see how they only have traits.

In our PCT you can self refer to OT. We have done this, just rang the hospital were they are based. They sent some forms to complete and they are coming for home visit and school visit this week.

Might be worth checking if your PCT is the same.

Atypical autism might be a useful possible diagnosis to discuss with your son's consultant.

There are two competing diagnosis reference works, ICD10 and DSM-IV. 'Atypical autism' comes from the first. Some consultants are more familiar with DSM-iv criteria, but both are acceptable in the UK.