Should I say something to the teacher?

[debs40]

DS (7) is undergoing ASD assessment at the moment. He also has Developmental Coordination Disorder. It is pointing towards Aspergers. The head of the diagnostic team (a psychologist) went into school last week. She had seen him individually once before and said she thought the ASD signs were very clear. This time she observed DS in school and spoke to one of his teachers.

School have been very slow to pick up on these issues. He looks like other children so why would he need special help? He doesn?t cause a problem, isn?t obstructive or aggressive. He must just be lazy and overdependent if he needs help. Intervention by the occupational therapist, community paediatrician and joint attendance on a specialist course with us and the class TA have helped.

My concern is that when the psychologist went in speak to the teacher, she was told DS doesn?t have problems asking for help (he has an IEP aimed at helping with this), always gets changed for PE first (he can have problems dressing and this has previously been noted) and sometimes chooses to play with girls (much has been made of late of his antipathy to girls ? for some reason he cannot cope with them and has lashed out). This didn?t sound true.

Anyway, DS says he can never remember choosing to play with girls and looked horrified at the idea. He says he has only ever been first for PE once. As for the communicating, well that has got better after months of battling with the school for help with it. But he has had IEPs addressing this for the last 6-8 months and is confirmed as having social communication difficulties by a SALT. The issues with PE and girls are documented in his home/school book.

What was the teacher playing at? I know school don't like outside professionals interferring but it felt like we were making things up. I am also worried that this undermines the diagnostic process as it contradicts what we have struggled to establish at school and why.

Should I say something?

Yes, definately. How infurriating when we have ongoing issues with our dc, finally someone seems to listen, we are slowly going somewhere and then a teacher or an EP (for my ds) goes and makes things appear all rosy! thus making us look as if we are paranoid pushy parents!!!

I would either go and speak to the teacher about this or at least write an email. Why trying to diminish the issues , surely it isn't in the school interest and absolutely not the best for your ds.

I follow your posts regularly, and the school just isn't playing ball with anything are they?
Go for it, put them back in line.

Thanks. Believe me, our CAMHS are not worth their salt. Despite the psychologist initially telling me it was all clear, her assessment of him at school (compunded by her conversation with the teacher) clearly had changed her mind. So we had lots of comments about good eye contact and the teacher visiting his table to support him and how lovely the teacher was and what a great lesson she had taught and how welcoming the school were and how he had no problems asking for help, with girls, getting changed concentrating etc.

Anyway, I just want to feel confident about any dx (or failure to dx) but this just felt like we were being completely undermined. It was suggested that this might be a sensory problem more than anything else and that the SCD problem might be a reflection of the sensory issues. Not sure what the difference between that and ASD is???

So, I don't know what the psychologist thought she was going to see (she mentioned him giving eye contact and not lashing out - we had never suggested these things were an issue) but the teachers clearly helped her lean away from ASD. She still wants him to have the ADI and ADOS though.

I want to try and go somewhere else for them.

"I just want to feel confident about any dx (or failure to dx)" ... i totally know where you are coming from on this.
DH and i want to be able to understand and agree with the outcome re:dx or no dx, when the day comes.
Both DH and i know DS is on the spectrum, we also know he is very high fonctioning despite his speech delay.
So should the outcome be a non-asd dx, we want it to be for very good valid reasons... the usual line of: 'he can make eye contact' or 'he seems able to follow simple instructions during play-led interaction with a professional' are simply not good enough!!

FGS!!! high-fonctioning and spectrum comes to mind.
My DS also has sensory issues, with noises, lights, food and tactile textures, typical ex: he has dry hands atm, and has been refusing (to put it mildy) to have the hand cream on, as he just can't stand the feel of it.
That's just an example, there is so much more about DS that is clearly different, yet his EP is happy to put all of his difficulties down to his speech delay!!

Should our local Cahms ever manage to speak to her, no doubts she'll be steering them away from ASD too. (To top it all she has only ever seen DS once for about 20 mins 5 months ago, whislt he was happily running in the nursery garden!)

I think teachers, EPs or even SALTs who are not qualified to recognize, understand, and diagnose ASD, especially the 'milder, not so clear-cut, maybe atypical? child' should do us a favour and keep their mouth shut! Grrrr...

I can see why you would like to have a second opinion and getting someone with true competence to assess your DS.

Exactly, it is a case of why should a young child be made to go through lengthy assessments when the team can clearly see this will be a borderline case and need careful thinking.

Of course, most of the team making the decision will never even have met DS so are going whatever raw data the test results produces. Whatever happened to clinical judgments? I can understand the need for a panel of experts who know the child but a team of individual representatives from each dept who may never have met the child seems pointless to me.

I am going to try and find out how tertiary centres diagnose and see if there is a difference and then argue that he can't get that level of assessment here so we should be able to go elsewhere.

Yes,you're absolutely right.
I hope not to have to follow that route myself, but will not lie down if i feel we are been mislead.
Anyway all the best of luck with this.

The trouble is Star that there is no prospect of formal diagnosis any time soon.

The service is barely functioning, it is being taken over by another MHT in April. The staff at CAMHS have lost control of the waiting lists which are huge.

I don't want my son seen by this service and the points I raise about their inability to understand the finer points of ASD are pertinent to this decision, and my attempt, to get him seen by a service that can actually do the tests within a decent period of time.

We have been waiting 15 months already.

On top of this, because DS is at school, it is important to fully be confident that you have a good idea of his limitations for statementing purposes. Labels are not important if needs are catered for but it seems that needs are often too easily ignored if not related to the label a child carries.

School really is a different ball game.

Thanks Star, your comments do help and it is good to have your thinking challenged as it is all too easy to go off on a tirade.....

I think my fear is that his needs won't be picked up by this team who seem to workshy and frankly crap. So, I suppose the label becomes important in demonstrating the needs exist.

However, if you go somewhere with competent experts who say 'not possible to dx but here are the child's needs', I'm quite happy with that.

Our fab OT takes much the same approach. We don't talk about labels but about needs and it is individual and helpful as it should be.

A crap CAMHS service is likely to say - no ASD, therefore no SCD irrespective of the evidence and it is because I haven't the patience or energy to engage in pointless battles that I need to try and not deal with them

As for calm and clear thinking .....matey, matey, tis the wrong debs you are talking about there!! I do apply my lawyer head to everything thouhg and it can get you nowhere sometimes

my ds now has a dx (pre-school, took nearly 2 y even though mentioned at the first meeting!), I am getting v. annoyed at the professional taking a one action view 'well his ASD therefore must need visual aids to help him, and certain techniques to encourage him'. NO my ds does not need these methods, these areas are not his issues he has other ones and at home we been working on these and his ex-keyworker (nearly cried when she left) really understood him and came up with lots of great suggestions.

So the dx currently seems to be blinkering the so called experts and they are not supporting him. as for school next year, he will go on action plus and I think he will be as you say '
School have been very slow to pick up on these issues. He looks like other children so why would he need special help? He doesn?t cause a problem, isn?t obstructive or aggressive. He must just be lazy and overdependent if he needs help.' this will happen, unless he flips as is to much for him, just don't know.

Takeme is spot on too. It is all about needs so even having a dx is no use if needs aren't understood and professionals work on assumptions and stereotypes rather than on a child's individual difficulties.

Understanding needs is key, if you understand them, you may be better able to dx and better able to make suitable provision.

If you have no understanding, whetehr you have a label or not, makes no difference.

Which I suppose is the conclusion I have come to with this CAMHS team.

I do think, getting back to the original question, that providing clear information about needs is therefore really important....not just in terms of dx'ing but in terms of getting them met.

Teachers and other professionals who cover up needs are creating real problems.

does seem v. strange that they are covering it up rather than asking helpful qus when the professionals come to visit. do they think they are being tested as opposed to working to find the best interest of the child.

Bang on the money takeme...one of my son's teachers admitted as much to me. She said that they take suggestions very personally and they have been very slow to ask for help, partly because they don't have much to do with him (he causes them no problems) and partly because they don't want to look like they don't know what they're doing.

The class TA who is on the Early Bird Plus course with us has admitted this too.

Hi Debs

Any information passed by the school or held on record by this pyschologist must be accurate. If it's not then it can not only cause dleay in dx but result in the wrong dx completely.

Imagine some future Paed opening DS's file and seeing that he loves playing with girls when DS himself has just told him he doesn't.

Therefore incorrect info must be corrected.

I would write to the Psych and point out the misinformation and enclose a copy of his IEP as evidence.

You need to keep a close eye on all documents etc at all times.

If you really want to get dx underway quickly then complain to your MP - you'll be moved to the top of the list. Ask for a referral to another CAMHS - try North Bristol which comes under Avon and Wiltshire MHT- they have experience in dx-ing Aspergers.

Best wishes

Thanks. I have actually gone down the MP route - last November. We got a long letter back off the Chief Exec of the Trust explaining the waiting list and how they were allocating more money. This has proved to be a take over of management by another MHT which is supposed to happen in April.

I am seeing the GP in Thurs so will ask about Bristol then. We couldn't find anywhere save Oxford on the choose and book last time we checked and then we didn't bother to refer as we were told the list was moving here. It wasn't, we had just been bumped up it a bit. We have since gone backwards!

I just hated the way that this psychologist (who was responsible for the chronic situation with the waiting lists and so is not exactly enamoured of me!) instantly took everything the teacher said as being true (you could tell in her tone) despite what we had both said.

So the Psychologist in question doesn't trust their own clinical judgment then?

You have IEPs that prove your sons difficulties as his teacher perceives them to be?

Trust your instincts, gather all the evidence you have and trust that you will get to your goal.

Choose your battles.

You could go back to MP and say that the promised additional funding has had no benefit to you personally and that you are still waiting. That you want him to take up your case. This really is worth doing.

You are entitled to ask for appointment in other MHT area if yours cannot deliver. Like this one www.nbt.nhs.uk/services/wch/child_adolescent.htm

Thanks WetAugust. I can try. MP is retiring on health grounds at the election so I'm not sure he will have the interest but then again, he might care less about upsetting people!

I've gone back to my MP after his first letter to the authority I was complaining about and he did take it further. They need to know when services in their constituency are non-existant / difficult to access.

Access to Health Services is a National issue that MPs can influence - unlike Education which is devolved to LAs and has it's own legal framework for appeals etc.

Just complain, complain, complian, .... until they get so fed up answering you the peeny finally drops and they realise they could stop you complaining by actually doing something (there's a novel idea )

Mmm, I don't know what to do now.

I popped a note about this in to DS's home/school book - just saying we were confused about comments reported by psychologist and wanted to make sure we weren't getting things wrong.

No response on this from teacher.

Yet, note in book about an incident with another boy today. No detail about incident. DS told me he was scratched by boy and then told me it was because he had tried to stop him and other friends playing football. DS doesn't like football (he has poor coordination and just can't kick) and has been upset recently when his friends moved on from his games to playing this. Teacher did not 'red card' boy for scratching presumbably because of DS's actions.

Anyway, I shouldn't have had to pick out the detail of that from DS as he gets really upset talking about school stuff. Isn't that the purpose of the book?

Also, this is the third time in the last week and a half we've exchanged notes about school playground problems, namely friends playing other games and DS not coping with that. Was this mentioned to psychologist? Apparently, not. It is all noted in home/school book though.

If I persist in asking about comments made to psychologist, will I look like I'm trying to control the information school provides? Ican't work out whether there is anything to be gained but feel angry that relevant information is not being shared.

Debs, i had a similar problem with OT ie she went into school, school told her no problems and everything was rosy.

I told OT in writing what my concerns were and listed all problems reported to me previously by school staff.

She contacted the school again and offered to go in and make recommendations and was told her services were not needed!

I complained to the OT manager, as it is not for the school to decide. OT manager then emailed SENCO(and copied me into) with recommendations and OT went into school again.

I now 'get in first', when i knew ASD Outreach were going into school, i sent her copies of all reports and a covering letter telling her of my concerns and what concerns the school had reported to me.