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Child Development Centre have just refused to assess DS. What can I write in letter to persuade them?(24 Posts)
He has shown AS traits since nursery, but because we lived abroad for 4 years, he didn't get an official diagnosis, although did see a Behavioural and Social Therapist and attend a small group on 'social thinking' at a children's therapy centre abroad. Since we've been back in the UK, school have raised concerns and the SENCO has sent off application for him to be assessed at hospital Child Development Centre. This has taken over a year, and the latest was that we were supposed to be getting a date for an assessment over the summer. Now I get a letter saying
'Having discussed this at our multidisciplinary panel it was felt that [DS]'s main difficulties are around concentration, impulsivities and distractability. It was therefore felt that it would be more appropriate to make a referral to CAMHS for assessment'.
I'm really furious. How can they make this decision without even meeting him? And after wasting 18 months.
Of course there is a huge waiting list for CAMHS, and as he's now in Y6, I don't know if we'll get anywhere before he goes up to secondary, and I'm worried that he'll fall apart there.
From school's point of view, his main issues are inability to stay on track with a task, distractability, very slow poor handwriting, fidgeting. But I don't think he has ADD. The SENCO agrees with me that he has social issues, not just attention-related.
She has said that she thinks his issues aren't severe enough to get an AS diagnosis, but she does think he has issues. If he were to be assessed properly and they then tell me he is 'borderline' and not diagnosed, then I will accept that, but I won't accept them just passing the buck to CAMHS because they have a heavy caseload.
SENCO has said she will get him another assessment from SALT (he had one recently which flagged up difficulties), but that's not till December. She has offered to write to them to ask that they reconsider, and I said I will write too. What shall I say?
To try to summarise what he's like: high IQ, very quick at absorbing information, very good memory, almost photographic, very early reader (reading at 3, free reader of chapter books at 5), very advanced vocabulary (which is not so obvious now he's older); emotionally immature, cries easily (at home), anxious; poor at understanding people's motives, misreads social situations, gets on with older people, has few friends at school, low self-esteem as he's not sporty or cool; has obsessive interests that last about 6 months, eg. Titanic, supercars; sensory sensitivies eg. freaks about sand on feet; not very coordinated, not good at sport; can be very funny, acts as clown to try to be popular and can be inappropriate; loves reading and gets very absorbed in whatever he's reading, so it's very hard to get him to stop; very forgetful and disorganised, eg. gets out of car leaving school bag behind and not shutting door; really hates handwriting so does anything to get out of it, writes very slowly so often has to stay behind to finish tasks at school, struggles to get his ideas on paper; was in trouble at school for fiddling, not paying attention.
There's no point in me writing a long letter to them describing what he's like, is there? Should I just pick out some quotes from the report from the therapist he saw for group work abroad? She was very clear that he had difficulties, but SENCO said they won't consider it as it's too long ago (3 years), although we did send it all.
I suppose I'm hoping there's some magic phrase I can use to make them reconsider.
Think about those social issues and give examples. So for my Ds, watches a film where they say something he doesn't get - he laughs as his brother cracks up. I ask " why is that funny?" Ds " I don't know" so he acts appropriately but he doesn't really understand - he's copying his brother. He follows rules to the letter. Baby's not allowed on the stairs so Ds pushes him off. When playing with siblings he can't tell when something has changed or gone to far, sibling is crying, I ask why " he likes it" - he liked it five minutes ago but not now. In the car, sees the house and opens the door to dive out even though the car is still moving.
Been told my Ds hasn't got asd by the way. But as you see, he's quirky.
The hi iq and early reading are stereotypes NOT part of the diagnostic criteria.
Google the criteria and think of examples for the symptoms that are applicable. Use day to day examples and ones from reports/professionals.
And then of course CAMHS will bounce it back saying it is not a mental health issue - sigh!
We were bounced back and forth between the two services until school TA had had enough and made a very irate phone call on our behalf to the paediatrician's resulting in the ds's finally being seen.
As zzzz says look at the criteria - note which if any fit your ds fits and list these giving a brief example or two of how. E.g. so rather than just saying he is anxious say what he is anxious about.
At the same time I would recommend you ask school to call in an education psychologist as they clearly recognise he has difficulties and then put in place the strategies she recommends.
Although we did eventually get a diagnosis practical help has come via school and as they are so fond of telling you this should be based on need and not diagnosis.
I'd be inclined to try and cut through this and ask for an EHC needs assessment. Ask the SENCO if she will support you in this. In case she thinks you have to get a diagnosis first, you don't.
Thanks for all your input. A lot to think about. Ultimately I suppose it doesn't matter what diagnosis, if any, he gets. What matters is that he is helped to overcome his difficulties. I just don't want him to be continually in trouble, and not getting down on paper what he's capable of verbally. I will raise with the SENCO the possibility of getting an ed psych in.
Gruntled: who does an EHC needs assessment?
Now I've got to try and write that letter.
I also agree with gruntled. Even if your Ds would never in a million years get a ehcp, they need to call people in to prove he doesn't need one.
Maybe something to think about for a plan b?
The senco / school requests it, but so can you. Look on the ipsea site
He sounds a lot like my DS who was diagnosed with dyspraxia and sensory processing disorder when he was 6.
Having said that, I didn't get that from the NHS as he was discharged as he was referred for an ASD assessment and he doesn't have ASD. I was enormously frustrated because I know there was 'something' wrong. I took him for a private assessment which cost me £800 but it cut through about 2 years of referrals. He now gets a lot of support at school (and DLA so I guess you could argue that my investment was well worth it!)
Given your tight timescales, if that's a financially viable option for you, it could be worth considering.
Even if your Ds would never in a million years get a ehcp, they need to call people in to prove he doesn't need one.
This isn't correct. They can refuse to assess in the first place (and do!)
Sorry - am not attempting to diagnose your DS over the internet. Just to say that there are a lot of other neurological conditions that don't fit into the standard neat boxes. And there are lots and lots of overlaps as Polter says
Zzzz - maybe it's different county to county but when my request hit my LA they notified the EP, learning and Lang specialist team to prove he didn't need assessing. So yes they refused to assess but the EP was called at that point. I remember him telling me I was crazy and what the hell was I playing at! That was well before he went in. Of course he didn't go into until I appealed and they caved. But up to that point the school didn't even send in paperwork for EP. So it did get me access to the EP
I'm not advocating that anyone actually goes ahead with a appeal and would never recommend it as its taken years and not over for me. But it did start the ball rolling for us. Unless I'm getting my time lines mixed it. It was three years ago now
It's a plan b if like my school they say never.
But my sons diagnosis process has never ever involved education. They in my county are totally separate even with the new ehcp. They just don't talk cross departments
Here you request ehcp with "evidence" that you need assessment. The assessment process involves the lea getting EP, SALT, OT to assess the child. Then if you get one, they write in the profs recommendations.
So ours just refuse to assess
Ours refuse to assess as well. They never called in slt as part of process and even with a statement for six months he's not been assessed by slt.
But the LLS team was useful. As part of their / LA evidence he didn't warrant assesment they did pick up a lot of things.
I don't know if EP / schools are geared up to recognise things like dyspraxia or spd as a aside. School told me they have seen one dyspraxic child before. Highly unlikely to be true.
the LLS team picked up on his tip toe walking and flapping which was great when school backtracked and said they have never seen him do that.
Depends how good they are I guess.
Thank you all. I've never really looked into dyspraxia, and having googled I do recognise some traits, but not others. He was normal with hitting physical milestones like crawling and walking, and he can ride a bike.
I know there is overlap between the various conditions, which is what makes it so frustrating and difficult. I think DS has elements of AS, ADD, possibly dyspraxia. I don't even know if sensory processing disorder can exist outside of AS. But I think he possibly doesn't have enough, or not severe enough, issues from each one individually. It's like it's a buffet and he's picked a few difficulties from each! But the thing is, he's not that rare and unusual, is he? There are lots of children, especially boys, who hate handwriting, struggle to pay attention in class and aren't very skilled in social situations. He's not hyperactive as in bouncing about like some children I know, but he does fidget a lot. I had a thread a few months ago about him getting sent to the headteacher for fiddling with a pen after he'd been told to pay attention. Fortunately his new teacher is less strict.
It's just utterly ludicrous that the NHS assessment service is entirely separate from CAMHS. Maybe private assessment is the way to go, I don't know.
Anyway, I wrote my letter with examples of behaviour listed under headings similar to those in the NICE guidelines for assessment, so I'll update when I hear any reply.
In my health authority it is Camhs you are referred to for asd assessment.
So I'd perhaps ring whoever sent the letter and ask the, why they have referred there.
When the developmental pead refused to see my ds and suggested Camhs, and Camhs refused and suggested ed psych I rang and asked them on what grounds. They said go referral but if I disagreed email them myself for consideration and they'd look at my points. I did and he was given an appointment.
I agree about giving detail. Be precise, list concerns, examples and how you've supported him, how the support does or doesn't work.
I'd also say who he saw whilst a broad and what they did - what was the outcome of this.
There seems to be an increasing number of referrals refused from what I've read (anecdotal obviously!) but once your in the system although waiting lists are long at least your in!
Ds1 exhibited a lot of your son's difficulties and was diagnosed with dyspraxia, finally, at 13. You can go to your gp and ask for a referral to the OT on the basis of what you have described here (leaving out the high IQ). I went to private OT to speed things up but you will still need to see [NHS] paediatrician after that. You don't have to do that through CAMHS or Ed Pysch. All you need is for the school to back you up with your concerns. My son can ride a bike (although he hasn't for ages) and play sport badly, swim etc, walked and crawled normally and didn't bump into things, has legible handwriting but still was diagnosed with dyspraxia. It was a combination of social communication organisational and motor problems. They do a battery of tests and he was in the 0.1 percentile for some areas! Yet appearing to function "normally" - no wonder he was emotional.. You also need to be seen by a paediatrician after you have seen OT, as they can rule out other reasons for poor motor skills, like in worst case brain tumour (not saying that to alarm you, just that dyspraxia is a medical diagnosis so needs to be rubber stamped by paediatrician.) Dyspraxia is not just clumsiness it can be social clumsiness. It can also overlap with ASD, but exist independently to it.
For example son 2 has ASD and OT has just told me we should be considering pursuing a separate dyspraxia diagnosis, but tbh I cannot be bothered, as motor skills are presumed part of ASD anyway. But son 1 and 2 do present quite differently.
Private OT assessment and report with scores cost me £700 I think two years ago. They usually have waiting lists too, though.
It has been invaluable for dealing with the school. He still has the difficulties, but at least they know why. Ds1 is actually amazing, he has just passed Violin Grade 4 with Merit. And yet he can hardly tie his shoelaces or butter bread. Drama and singing classes have brought him out of his shell. Long marches suit him too..as no skill is required, just stamina.
Thanks knittingwithnettles, that is very interesting. 'combination of social communication organisational and motor problems' does sound like DS.
We have just had an appointment with the paediatrician - the things that he was most interested in were
repetitive behaviours - did ds line things up when he was younger, does he flap his arms when excited etc
Sensitivity to sounds, textures, smells and food
Friendships - does he attempt to make them, does he keep friends
This may help you pick out some information that you can use.
easterly winds that was my exact experience today. Op, we were 'rejected' from the CDC 2 years ago, and it's been a battle to get dd7 assessed.
Today was her school observation and the clinical psych from camhs rang to get permission to talk to dd on her own. She said that she wants to see whether her repetitive behaviours were routine-based or anxiety-based. My mind is frantically in overdrive to try to see what the difference by routine- and anxiety-based is. To me, the repetitive behaviour is all ASD, but I'm fearful they are writing everything off as just anxiety, which is the line they have been feeding me for the past 2 years....
UPDATE: Hello all. Well, guess what? I got a phone call today from the Child Development Centre - our appeal was successful and they will assess him! Due to my 'impressive' letter and the info from the SENCO. Thanks to everyone for your advice and experiences. I have had such a shitty last couple of months with some other unrelated stuff, I can't believe something has gone right. She said she can't promise an appointment before Christmas, but what the hey (as DD says), at least he will be seen by a professional.
What you have achieved, learn from it!!! This may well not be the only 'no' you have to get overturned but know now that you have the skills!!!
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