DS not been assessed, but doctor from CAMHS has now diagnosed him - over the phone!

[Shagmundfreud]

here Previous thread explaining our back story.

A few weeks back I cracked and wrote to my MP complaining about the impact of cuts to local CAMHS service and explained how having to wait so long for an assessment was affecting my ds and our family.

This morning on the way to school got a call on my mobile from a doctor from CAMHS who I have never met. Said she'd tried to phone me 'many times' before but not been able to get hold of me. Not true or the calls would have registered on my phone.

She thanks me for having made the complaint - says that they are now going to get more funding because of the number of complaints by parents and local pressure groups. But no suggestion of an appointment for ds as there are too many vulnerable children on the waiting list ahead of him. We have now been on the waiting list for over 6 months.

She asks what I am hoping to get from CAMHS and I say I want a diagnosis and assessment to help us as a family, and his teachers, understand him better and support his education. She asks me what makes me think he has aspergers. I explain his difficulties with social communication. His rigidity of thinking. His obsessiveness. I tell her I'm a qualifed teacher and that my sister has worked as a special needs teacher and knows ds well and also believes he has aspergers. I say the EP has suggested this diagnosis, while acknowledging that she is not qualified to make a diagnosis. Doctor asks me if he had any language delay. I say no, not that I'm aware of.

So then she says - "Look, if you think he has aspergers, and the EP says so too, there's no harm in you telling the school that this is his diagnosis. Give them my name and say that I'm in agreement with this. If this is not the case I don't think it'll do any harm. But I'll send you some information on aspergers through the post and some information you can pass on to his class teacher."

So basically - she has diagnosed him over the phone. Without seeing him or reading any reports.

And we still don't have an appointment. I'm starting to think we'll never get one.

And in the meantime ds is coming home from school in tears and furious two or three days a week. He is being removed from the classroom at least a couple of times a week, sometimes more. He gets left sitting in the heads office or gets sent into year one or reception. They have now agreed to keep a record of these exclusions because I asked.

My head is reeling from the phone call. I was very polite but she kept yacking on and on and I was simultaneously trying to drop ds off at school while listening to her.

Do you think this all sounds really odd?

I think she is trying to help but quite misguided! Very odd indeed!

Shagmund,

For get the above for a moment, although clearly bonkers and thankfully very rare behaviour.

Why do you want a Dx?

Omg that's unbelievable why are camhs sooo shit?! We waited two years after our intital referral to camhs to find they had lost the form!! Lots of phone calls later got forms to complete and we received a letter back saying " dear Mrs X Chundle thankyou for your forms we have placed Mrs X Chundle on the waiting list to see one of our pyschiatrists" so it would appear that now instead of putting mini chundle on the waiting list they have put ME on their damn waiting list!

Thank fully we already have a dx unless they're planning to dx me of course!!!

I can't believe they said that to you on the phone the whole service is really laughable

"Why do you want a Dx?"

I want an assessment because I want to understand him better. I'd hoped that an expert in child development and in ASD might help us with this.

I want a diagnosis so I can access local parenting classes for parents of children with ASD who won't allow you to join the class until your child has a diagnosis.

I want his teachers to understand that he has Aspergers and isn't just a bloody naughty and slightly odd child with a pain in the arse mother.

I'm hoping that once the school have this information they might actually provide some proper support.

SMF--this is very odd indeed. I had a similar thing with CAMHs who said they were undergoing restructuring and couln't possibly say when my ds would see anyone. Letter to the MP was enough to get a result in the form of a nurse who came to deal with DS's anxiety rather than any firm news on when the diagnosis would take place. We did that part privately because we weren't going to wait.

It shouldn't take a bloody letter to an MP to get a result and parent's shouldn't have to take an independent route to get the services they need.

Don't know what to do about this except maybe write more letters. The restructuring has left an even less adequate provision for schools who need help with children and they are still being told nothing about how long they can expect to wait for children they refer to be seen.

Does anyone know who campaigns for better services or is it all done via separate 'interested' groups?

Okay.

First. I don't think her shocking phone all counts as a Dx. Ask her to put it in writing and that shoukd sort her OT quick smart and hopefully bump you up the waiting list. Put in writing your request summarising your phone all and you'll get even faster attention.

Second. Most ASD parent classes don't actually ask to see Dx letter so you can just say you have one.

Third. As a teacher you'll know that provision is supposed to be based on need not Dx. As a teacher, you'll also know that this is bollocks. However, since the school will be unable to deny how it is 'supposed' to work you can use this to start the ball rolling with regards to support.

The very best thing you can do right now is start a log/diary of every contact you have with every professional, keeping quotes or promises that are particularly interesting that you can put in writing back to the either immediately or at a later date. Nothing like a list of broken promises with dates and times to boot someone into action. Include phone calls you make/email for which you get no response.

Keep a log too of any differentiation or strategies or exclusions the school is currently making to 'deal' with your Ds. This will be valuable evidence later on to help you negotiate or illustrate.

You could also write back to your MP to update them on this.

Am logging everything now.

I use my posts on mumsnet to help me with this!

Fully intend to email her with a summary of our conversation and to reiterate that we want our ds to be seen.

Think it's a cracking idea to write back to the MP to update them too.....

Diagnosis of ASD = triad of impairments plus significant functional problems plus not better explained by other disorder. Parent plus ed psych plus school all agree the description fits. Original referral form / letter plus (I presume) some other paperwork all very suggestive.
Actually, I think giving a guesstimate of provisional / working diagnosis and interim recommendations isnt that unreasonable. The unusual feature is doing that direct to mum, rather than by advising a professional. Eg, adult psychiatry w/list and a counsellor calls to say oops, seriously depressed, what can we do before the patient is seen, But you'll be on stronger grounds if there's a letter.

The chance of you eventually walking out of her office without a diagnosis of asd is pretty slim. The assessment will be useful in determining if it's hfa, Pdd-NOS, aspergers, atypical autism etc. It sounds like she isn't going to be putting him on an ados waiting list,

In the unlikely event that they still aren't sure, further evaluation is npt going to demonstrate complete cure, there's clearly going to be some sort of diagnosis coming, be it processing issues, attachment disorder, OCD, odd, childhood bipolar, ADD or whatever.

I've been trying to call you several times may well mean I've been f telling my useless service to get hold of this mum for me for weeks; I've finally lost patience and tracked down the notes for myself.

"there's clearly going to be some sort of diagnosis coming"

I'd appreciate it coming sooner rather than later. We've now been on the waiting list for CAMHS more than 6 months. We flagged up our concerns to his nursery when he was two, and again when he started reception. The SENCO referred him in year one, but there was a delay in getting a referral to CAMHS because EP went off sick for almost a year, and I hadn't realised that we needed a referral to CAMHS to get a proper assessment done. All in all it's been nearly 5 fucking years of us saying that he needs help, and he's still not been assessed.

He's leaving infants with a 1C in writing. I've been told he'll have no chance of getting one to one support in Juniors, other than what he might get from the TA, who, she's anything like the other ones he's had will be fucking useless.

If something doesn't change he'll fall into an educational black hole when he goes to secondary. The schools round here are terrible, and I'm scared my intelligent child will leave primary still not able to write a sentence.

I don't expect a 'cure', I just want some help in understanding him better so I can help him more, and so he gets more help at school.

Shagmund, there IS a chance he can have 1:1 but it lies in your willingness to undergo the statutory assessment battle.

From what you have written, I'd say you had a good chance (with a fight). At least, it appears you could demonstrate eligability in law.

TBH, given the current climate, I would not delay despite not having a dx. A statement will be harder to get the longer it takes you to get to that stage due to the plans for change by this government.

The reason for the 'fight' is precisely because of the impending changes to the system. Those with statements will have a level of protection. Those without will be shafted more and more as TAs are removed and cuts are increased.

And if you could 'choose' the dx, I would always recommend going for ASD, which is the umbrella term that includes Aspergers. So you are not saying he doesn't have aspergers iyswim, but nor are you labelling yourself out of criterias for certain types of help.

Agree with Star look at IPSEA website and get the ball rolling for a statement of needs.

I know initially camhs told me to tell the school to "treat" DS as if he has autism for the time being whilst waiting full dx as in all probability based on reports and parent quick assessment he is definately on the spectrum somewhere.

So that is what I did. I think the camhs dr you spoke to has more or less said the same thing iyswim.

Go into school and tell them you have been given a working dx of ASD and that DS is now under camhs for help (dont say anymore about further assessments/waiting lists etc).

Then start gathering all your reports and diaries together. Get a letter from this doc to say that she feels he is on the Autisic Spectrum to add weight to it.

If he is struggling in curriculum ie 1c writing then he should be entitled to help education wise without a dx anyway. x

And keep on ringing camhs EVERY time your DS has a stressful day of it as this could well get you in to be seen earlier the more you shout. :)