daughter's assessment inconclusive...useless CAMHS

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Yesterday I got the feedback from my eldest daughter's assessment.

From everything they said, they have relied very heavily on the screening tools they used, and very little on her history. They used the ADOS and I think the other one was the ADI-R, and she was filmed with the psychologist.

They said she scored very high on at least one area, borderline elsewhere and zero on at least one section.

I feel really angry at their incompetence. They clearly didn't know how to deal with the situation, are clearly biased towards professional opinion and lazily have not taken her history into account.

Because she has been home-educated for 2.5 years they said they didn't have any up-to-date social observations of her at school. I provided them with two very long historical school reports which both had one or two relevant bits of information in them as well as giving them detail of her attitude to socialising, examples of things that have happened with socialising etc. since she has been home-educated. So they are disregarding my input just because I am her parent and her educator, whereas they should have been taking on board my feedback in the same way as any other educational provider.

She is passive, and does adjust her behaviour in public just like a lot of autistic children, for instance holding it all in at school is a common phenomenon with ASDs. So they said she didn't display any stereotypies (stims) which are not even a diagnostic criteria, but which she does sometimes stim with her hands at home but never does in public - I stim at home but not in public. Both her sister and myself are diagnosed on the spectrum, and like my eldest daughter we also are bothered by being watched and what other people think, so this would also be a big factor in her behaving differently in such a setting. They said she didn't have any unusual speech - I have AS and don't have any unusual speech. They did notice she didn't maintain good eye contact at times (again, not a diagnostic criteria) but put it down to being shy (she's not shy, just like anyone you are slightly more reserved with strangers). I told them that this pattern of eye contact is typical of her because I watched how she interacted with some friends at skating and she was the same, they then suggested that a 'family worker' from CAMHS comes along to observe again when we go skating! Can't they see how ridiculous that is, she is not going to behave the same as she normally does when she knows she is being watched!

They also said she didn't display any sensory issues - why would she sitting in a room quietly with someone, not all autistics are Rain Man! I have previously given them actual examples of her sensory behaviours and issues.

Because she has very bad OCD (hand-washing and fear of dirt and germs) they also speculated that her OCD could have pushed her AS score artificially high in the section she scored highly in. I absolutely do not believe this is the case. She has all the traits of AS, and those can't be accounted for by OCD.

They also said that although initially when she was asked to use some objects imaginatively, she didn't know how, once the psychologist got involved and gave her ideas she was able to do it. People with AS can have great imaginations, Tony Attwood and others talk about how AS children can often get really involved in an imaginative world. It is social imagination that is impaired which is entirely different! I am exactly the same, I find it hard coming up with my own ideas, but if someone gives me a few kernels of ideas I can run with it. This is clearly what my daughter did.

I sent them a huge volume of detailed information about her, including a 'life report' from birth upwards, lists of actual examples of her taking things literally in conversation, examples of situations where she melted down, examples of her having sensory issues.

What really angers me is that we have NHS NICE guidelines which state:

NHS NICE Guidelines http://www.nice.org.uk/nicemedia/live/1 ... /56428.pdf which state:

So they clearly didn't follow their own guidelines. They are clearly not trusting what I have reported to them. They have apparently relied very heavily on the testing tools which are only intended for screening and in conjunction with a detailed history, because they kept talking about the responses to the questionnaires and when I asked if they had read all her file they didn't seem to have and said that they had enough information from my answers to the questionnaire (which I know for a fact is not the case). In her file, apart from the information I have provided (which is up to 50 pages worth) I have explained contexts and used research links to clarify and explain certain things. I have also used comparisons to her diagnosed sister. They have ignored all of it.

So they are now talking about addressing her OCD and anxiety (that part I am happy with) and trying to get observations on her regarding AS. She doesn't even want to go back to CAMHS and her and I are fed-up with them dragging it out unnecessarily. If they don't feel confident, they are probably able to refer her on to a centre that is experienced in diagnosing girls such as the Lorna Wing centre.

I could scream, it is so incredibly frustrating that they are not listening to me and not even following their own guidelines. She meets the diagnostic criteria in all the triad of impairments and they didn't even mention that, all they said about was the results of the questionnaires.

People with Asperger syndrome are highly imaginative. The way I see it is that I basically did not even live in this world as much as in imagination. That basically became also the main factor of reducing my ability to adapt my behavior to Neuro typical. The critical part is when a AS is around people they become hyper stimulated an also more observant of surroundings so naturally they try to adapt and are more responsive around people. Kind of like switching the brain from dream mode to living mode also probably why some people think that people with AS are extroverts while in reality they are not at all extroverts. Not to mention that most AS people have absolutely no sensitivity in social situations unless they learn by observing people. Basically I can remember from very early on trying to understand human behavior wonder what they are doing.

The problem your daughter has is that when you write down an observation it is something subjective to your experience so maybe doctors think that your observations could be false. Which is sad, but doctors rarely trust anyone for also good reason. So they need to be critical. Stims do not count as much as inability to understand other people.

The fact that your daughter does not fit in to the diagnosis is the typical females have less AS issues stereotype. It is a sad fact, but some females are simply more developed compared to boys and that gives them the extra advantage. Note I remember delayed development until 10 years of age. After 10 years of age my empathy would go higher. Before that I pretty much smiled all the time.

Your daughter obviously also has good self control, but maybe making notes when she behaves in a AS way could be helpful.

Thanks for your reply.

She definitely is victim to the criteria having been written based on male research.

But I have already written them a huge amount of notes of actual real-life examples of her AS behaviour and sent it to them as I said in my OP. The problem is, that they are not reading it or taking it into account. They are relying at least 70% on their questionnaires judging by their comments and answers they gave me.

The clinical questionnaires are definitely not to be used standalone, or treated as a majority of the evidence. Even the NHS guidelines state that they can be used but are not to be relied upon.

And the fact that they didn't even see stims or unusual speech patterns in the 1 hour they saw her, and the fact that neither of these are diagnostic criteria, they cannot be used as reasons against her having AS.

The NHS guidelines also state the things I put in my original post (Always take parents’ or carers’ concerns and, if appropriate, the child’s or young person’s concerns, about behaviour or development seriously, even if these are not shared by others. and the level of parental or carer concern, and if appropriate the concerns of the child or young person ...amongst all the other stuff they ignored the guidelines on).

They clearly have outdated opinions. The two people involved, were not highly experienced or senior, because they asked the involvement of a senior colleague (who admitted to me previously she hadn't read my daughter's file) to just oversee and agree their findings.

I am not in the UK so standard disclaimers apply.

Is there a process for appeal? Depending on what the proper procedures are, I would write a letter to the uninvolved supervisor's supervisor outlining your case with as much of their jargon as possible (so they take you more seriously)

Thanks.

Well, never one to rest on my laurels, I did send a long fax stating my points. Actually being an Aspie I'm very verbose so I sent them two, and I have another one planned (I keep remembering pertinent points!)

In the first fax, I requested in writing details of why they felt unable to diagnose her and asking for someone senior to go over her whole file and read everything, because she meets the diagnostic criteria.

I have also told them about a genetic test she can have, a particular chromosome deletion, because there is a lot of genetic information in my family that is relevant to this, and one of the things caused by this chromosome deletion is autism.

They also know I am diagnosed, and do they seriously think I would not recognise autism in my own child, having it myself! The fact that no-one, including my husband, listened to me about my youngest child, and I was proved right, she is now diagnosed HFA...and I still have this ridiculous fight. I mean do they seriously think in view of the fact that I have reported a full complement of ASD behaviour in her, I have AS and my other child has AS is irrelevant!

The government says we are supposedly the experts in our own children, yet when you face the system you'd never think so.

I'm just sick of having to push the NHS and education system here for absolutely everything. If only we had the money to go private.

Im bracing myself for a similar outcome actually, or daughter hides it well and we are currenty going though a good patch and shes stopped the violent behaviour for now, I know this wont last though. I am expecting a working diagnosis and we will probably have to come back to it in a few years :/

ConfusedNewb I don't think you will have a similar outcome, unless you too happen to get clinicians that don't listen to the history. My daughter is home-educated, and they seem really hung up on getting input from school teachers.

This is despite the fact that I told them my younger diagnosed HFA daughter did not get picked up for autism or anything at all, when she was at school (as neither did I as a child).

They relied very heavily on the screening questionnaires, which is a big mistake and unlikely you would be unlucky enough to find the same. They also were not senior clinicians, again, you would have to be unlucky to be given two/a team consisting of junior clinicians.

Anyway, I have now sent four faxes off to them, one including this information:

http://www.autism.org.uk/about-autism/a ... ctrum.aspx



And I also stated the fact that the whole assessment was too short:



I sent a list of the four subtypes of Asperger's (Lorna Wing) and stated which parts fit my daughter. My last fax basically listed her behaviours and asked them to respond to me to state how all those AS behaviours were explained by OCD and what else other than AS could explain them. I reminded them of excerpts from her school reports from when she was at school at a younger age, which the teachers noticed her tendency to dominate groups and to be averse to listening to the views of her peers, as well as misunderstanding the intentions of her peers when they made "throw away" comments. This type of teacher's comment was in two different reports from two different schools and they have not taken it into account. And the fact that teachers tend on the side of diplomacy in describing a child's behaviours to its parents, shows that for it to have been raised in school reports that it was very noticeable.

They stated at her assessment that she needed further observation because there was no up-to-date school information but they have had relevant past school history and up-to-date history on all her socialising and behavioural issues from me. They are clearly not believing me. And it's odd, because they accept she has OCD based on what I have reported (although they will have noticed her sore hands from constant washing) and yet they are not accepting what I have reported about her AS behaviours as valid! They seem to be scared of making a mistake in diagnosing her, but there is so much evidence.

They are going to have a meeting in the next couple of weeks to discuss it again, because I've sent all these faxes. I just hope they see sense.

Be prepared to fight for your daughter though, to ensure she gets the right diagnosis and go armed with research on how girls present differently and actual examples of her behaviour and ways she e.g. takes things literally and misunderstands jokes etc.

You could go with stuff typed up (copy and paste quotes from the internet etc. with links to relevant research) that you can refer to or send them beforehand. Although I sent lots beforehand and they didn't bother reading it so you could bring it to be sure it's taken into account. Also, see my post higher up from the NHS NICE guidelines about them listening to you even if other professionals haven't seen any signs. So if teachers don't notice a problem it doesn't matter, even my youngest daughter's paediatrician told me in writing that schools don't always notice things.

Thanks, Im just a bit concerned that the school dont see her behaviour as shes so good at hiding it :/ Also Ive had a lot of Drs including CAMHs pass her off as fine which I imagine wont do her any favours! I hope you get the help you need soon, fighting for it is so tiring

Print this off and take it with you:

http://www.autism.org.uk/living-with-au ... -home.aspx

Also quote the subtypes of AS, not all autistic children are the same.

It is hell on earth fighting. Do they really think people would take their child for a stressful assessment if it wasn't necessary! And it's enough coping with autistic children as it is, without having to fight for recognition and support on top.

Best of luck - when is the assessment?

[quote="whirlingmind
It is hell on earth fighting. Do they really think people would take their child for a stressful assessment if it wasn't necessary! And it's enough coping with autistic children as it is, without having to fight for recognition and support on top.

Best of luck - when is the assessment?[/quote]

Apparently so, and my mother in law seems to think so too! Im dragging her to all of these appointments, stressing her out all so I can get her labeled for life when shes actually fine!

Shes had part of the assessment and we are waiting on the school visit after the Easter holidays.

Aww, it's even worse when family members don't support you. Well, they don't have jokes about MILs without reason!

I will keep my fingers crossed for you. Do update after it's all happened.