Advice re CAMHS assessment for ASD

[whichcamera]

I have a 6 year old son who is being assessed by CAMHS. He has appeared very different since birth but this has become more apparent since starting school. Many of the positive differences such as outstanding early speech and learning have now turned into negatives with social interaction and toileting issues. We feel that he shows the characteristics of Aspergers.

School seem unaware of any issues other than toileting although report incidents to us with other children at playtimes.

CAMHS assessment appears to consist of 2 one hour sessions between my son and a psychologist. My understanding is that an assessment should be far more in depth and carried out by a multi disiplinary team.

Are we correct to be concerned by this? We welcome any advice on how we should proceed.

Thank you very much.

IM(limited)E, it seems it is totally different for different children.

My DS is being assessed for possible ASD, he is now either seeing or been referred to: Paed, EP, SALT, OT, Physio, CAMHS, and hearing/sight tests. Others I have heard of have been under more, and less.

I guess it would depend on how severe/complex/obvious his needs are.

I have to agree with NatalieJane. It depends on the child, and it seems to also depend on the area you live.

Our son is 4yo and was initially referred by GP to CAMHS, who told us he is too young for them to work with, that he needs to see a paediatrician. (CAMHS said basically that they deal with older children, not younger ) Anyway, DS2 is being assessed for (and suspected to have) ASD, ADHD, sensory processing disorder, dyspraxia, along with speech and language delay. So he's under the varying levels of care of paediatrician, SALT, OT, and soon physio, as well as seeing EP, hearing/sight testing, and various different people through the school. The school SENco has already arranged one multi-agency meeting that was attended by most of these people (as well as us), and mentioned possibly setting another one up after we find out if his statement is approved (just sent it all in, waiting results now).

I would bring up any concerns with both the CAMHS person as well as the school senco. Perhaps they can coordinate a bit and make sure his needs are being identified properly and met.

My DS(5) is in a similar position to yours whichcamera. When did you first meet with CAMHs?

We've had 2 meetings with CAMHs (one with DS one without), one assessment (ADI?), a home visit (without DS), the Connor's Test, a school visit and the next appointment is psychometric testing. DS has also been referred to SCAT.

This has been within 5 months. At every stage CAMHs has managed my expectations by saying the next step may take a long time (months/ a year) because of a waiting list, so I've been surprised at how quick he's been seen.

I suspect how quick he has been dealt with is a combination of his school issues, the knowledge of my CAMHs contact (he has experience of autism) as well as his availability. That last one is probably the biggest factor.

With my DSs soiling I went to the GP. He firstly prescribed a laxative to rule out constipation (Ha as if!). We now have a hospital appointment. I do not think his soiling issues are physical but need to rule this out.

As Triggles said find out who your school senco is and have a chat with them. There is also the education psychologist for your school (look at your local council for their number and give them a ring). Mine was annoyed that the school had not mentioned DS but we agreed to defer her involvement until the autumn. I don't blame the school, there are other children that need the EP more than my DS at the mo, and I suspect DS withh need the EP more next year.

Anyho, did any of that rambling help?

Our experience of CAMHS has been several long history taking and discussion sessions, Dd3 was moved from tier 1 to tier 2 straight away and is now meeting a senior MHN one to one for 3 sessions while he decides whether to mover her to tier 3, this is looking likely but then there will be a waiting list, we don't know how long this is but so far we have been in their system for about 3 months.

Also our school don't recognise any issues and this has slowed everything down for us. Dd3 had her first appointment with a community pead in April 09

Good luck.

Thank you all very much for your responses. We have had meetings with the school senco and head teacher but were unaware that the school had their own EP and will look into this.

Spiderobsession - we first met CAMHS about 5 months ago too and they also continually mention it being a long and slow process, presumably to manage our expectations. However we had been under a paed and seeking help for ages before reaching CAMHS so we are still finding the process slow especially now our son is in year one at school where the differences all seem more pronounced. It sounds like we have had similar appointments and assessments to yourselves. Does your son just soil or wet too?

Thanks for any advice

My DS mainly soils, last month his accidents averaged once a day.

The EP will have responsibility for a group of schools. I'm not sure how many they will have. From what I understand they have a set amount of time for each school which is why the Head needs to decide which children need it most. This doesn't stop YOU from phoning and havng a chat with her though.

In my case, the EP and I agreed to wait until the Autumn until she becomes involved because he will be in Year 1. Reception is more about free play whereas Y1 is more structured with the children being required to sit for longer periods at their desk. As we're looking at possibilities such as Aspergers, ODD, ADHD and cognitive coupled with his worse times being "carpet time" and assembly it's likely my DS will struggle more in Y1.

When's your next appointment?

It's good to get as many people involved as possible in my opinion. It really does depend on the area and the child as Triggles said.

My ds's CAMHS assessments were over 5 x hour long sessions but only 4 were spent with any 1:1 and those didn't seem to last that long (I was outside the room with a book). The end result was he is lacking in empathy and has anxiety issues.

He is also being seen by the EP who is lovely and who wants to wait a year until he is 7 before instigating any formal dx but has come up with strategies for us all.

The school SENCo arranged for a specialist teacher from Integrated Services to come in and observe and to give recommendations for the teachers to cope with his communication difficulties.

I have been keeping a diary of his behaviour and have come from a meeting this morning with the acting Head with support from a wonderful woman from Parent Partnership as we are trying to do everything we can to prevent his permanent exclusion. There is to be a professionals (and me!) meeting in May to join all this up.

You need all the help you can get, especially if there are incidents in the playground, you need to make sure he is properly in the system. Also he won't get a Statement unless the school can prove they've used every resource open to them (don't know if you were thinking along those lines).

Good luck

Many schools and teachers would not recognise a child on the ASD spectrum as SEN is not widely taught at teacher training college. It is therefore no real surprise to me that they have not noticed anything possibly pertaining to ASD.

Lambskin's last sentence re school is not quite correct. A child can go straight to statementing without having been on School Action or School Action plus beforehand. The only criteria for a Statement is need.

Sorry Attila, didn't mean to give wrong info. I was told that this morning by the woman from Parent Partnership but again that could be an area specific thing or could be for children, like mine who don't have a learning difficulty but problems that result in violent behaviour. Of course every child is different and so is every school. Sorry for any confusion I'm still new to this whole thing and spend my life bewildered at the best of times!

Attila... you are so right about teachers not recognising ASD in the clasroom.

We have finally come to terms with this I think, thanx to our CAMHS worker who explained to us that school are not necessarily[sp] being difficult, it is that they really don't know what they are looking for.

However, it still annoys me that if they know they have a child in their class who is being assessed they cant be arsed to do some reading [like we have]!!!

Thanks once again for all the helpful replies.

I understand that an NQT may not notice differences but would expect more experienced teachers to be more aware. School have advised that children do not have empathy at age 6. Very hard to know if this is correct but I think that all the 6 year olds I see appear to display it. I know that my 3 year old has displayed real empathy since age 1.

This week a parent comiserated with my son on his facial injury and he had a screaming tantrum that she was laughing at how he looked, he could not understand that the smile was sympathy. This seems more problematic than his not showing feelings for others.

spiderobsession - our next appointment is a home visit.

Has anyone had this? Do you feel comfortable with this? I dont really as I think huge judgements are made about our homes. I am quite sensitive as I feel it has been suggested that our "non standard" parenting causes my son to be eccentric. I dont feel that our parenting is different and certainly dont think our parenting has any real bearing as our other 2 children are just like others of their age and we have no concerns about them. My son is just like my brother at this age despite totally different parenting styles.

Thanks again

whichcamera - the school told you that children do not have empathy at age 6?!? Rubbish. Obviously they were sleeping through their child development classes. Most NT children display behaviour that can be easily recognised as empathy at 2yo, although at very simplistic levels (such as handing another crying child a toy for comfort). It becomes more directed and easy to see as they approach 3 and 4yo.

Home visits are pretty standard as they'll want to observe your DS in an environment where he feels completely comfortable. But I bet they'll be having a sneaky peek at what your home life is like. Wouldn't worry about toys all over the place, that's par for the course!

Thanks again for the responses.

Ineedalife - are you finding CAMHS supportive even though school dont have any issues?

I wont go to a meeting without my husband as I was getting to the point where I felt professionals thought I wanted things to be wrong and whatever I said I would be told other children do that too. Has anyone else experienced this?

I receive comments all the time about my sons differences from other people and have always done so. I have never received one comment in this way about my other 2 children, just what a nice smile or how cute and other normal things.

Why would school agree that our son has no empathy but then both the deputy and head state that this is normal at age 6? We had asked previously if there was any social skills help available but been told not until children are older.

whichcamera when you are referral to "the school" who are you specifically talking about that is telling you these things? Do they have a senco?? I'm curious who is basically acting as your liaison there and helping you through the process?

I would have thought if CAMHS is indicating there are issues, that school would be seeing some as well. Can your CAMHS worker meet with you and the senco at school for a better discussion? Then you have the CAMHS person as an advocate as well, sort of.

argh... typo..... "when you are referring to...." not "referral"....

Triggles - I may not have explained myself clearly.

When I said I have received comments about my sons differences almost from birth I mean from non professionals not from professionals ie from other parents, friends, family and the general public etc etc wherever we go.

School have only identified toileting issues but are being supportive with this issue. The school senco suggested his "advanced" interests/non stop reading is due to our parenting and I feel the teachers/head agree. Despite his being able to read himself and spending most of his free time reading we still read to him every night and I cant tell you how much I dread having to read about planets, even more than the years of trains! How school can possibly think I have encouraged these subjects is beyond me, I would only choose fiction and he has insisted on non fiction since age 2. His siblings only choose age appropriate books.

We have met with senco, head, deputy, nurse, and class teacher. As far as I know CAMHS have only spoken to school not visited. School do not report any other issues as I previously mentioned they feel it is fine to have no empathy at 6. They state that he sometimes displays inappropriate behaviours but so do lots of other boys and it is not a concern. Our understanding is that these mainly relate to playtimes not in the class.

We are not sure if CAMHS agree with us if there are issues or not other than the toileting which school have confirmed to them. I am finding the whole situation extremely difficult.

Okay. I see. Thanks, that does actually make it a bit more clear. LOL These things can get so muddled, can't they?

I would start by speaking in more depth to CAMHS and see if they do agree about the empathy and such. If they do, then you need to explain to them that you are being stonewalled by the school about it and that you are concerned that he is not receiving the help he needs. I found it very helpful to write out a full list of the behaviours and such that concerned us and bring it in to speak to them, so they knew specifically what I was referring to.

Thanks very much for this advice. My understanding is that CAMHS have completed their assessment and will give us an appointment to feedback.

I had written down everything for them including all his strengths, previous appointments, development and milestones from birth, family history and all behaviours with detailed examples, sensory issues such as mouthing and spinning, photographs of behaviours such as smearing, an example of his drawing of a person which usually contains full cross sections of all internal organs, veins etc. Examples of emotions, literal translations, social interaction, incidents at school, motor skills, interests and the toileting issues. I had also selected a couple of random days and documented his behaviours/examples of conversations.

Possibly too much information in hindsight and I have no idea how this has been used as it has not been discussed. Before his 1 to 1 assessments CAMHS questioning to us appeared to be suggesting that he is unhappy. We feel that he is in his own world and quite oblivious to things that upset us such as being the only child not invited to a party for the whole year or parents asking the school for their child not to be in his class or to be prevented from playing with him. Our concern is that he will become more aware of things though and we want help before then.

We have so far found CAMHS to be helpful, I think we have a particularly good case worker, He has been able to help us sort our own heads out about quite a few issues, but the main one has been school.

He has come across schools many time who have been unable to "see" any issues. This means that he has been able to help us to understand that we are wasting our time getting frustrated and need to consider another school.

So far we have completed 3 mega history taking sessions, I provided a diary that I had been keeping and we went through the other assessments too. We have also done a questionairre.

He is now having 1 to 1 sessions with Dd3 to help him make a desision about whether to move her to tier 3.

Dd3's school have been and are continuing to be really bloody minded about her issues and over the last 2 years our communication has detiriorated[sp] to the point where now there is none.

I hope you get the help you need for your DS.

I still feel as though we are stuck in some kind of warped game show. Will we get through to the next round? I don't know but I will let you all know.

Thanks for this Ineedalife. Your case worker sounds great, exactly what I need someone to help sort out my head.

I had not realized there were different tiers within CAMHS and have no idea what tier we are.

What is the difference?

Thanks

Err... in my area it works like this.

Tier 1, first appointment after referral,
We met with a Senior Mental Health Practitioner, who took a brief history and talked to us about why we were there and what we hoped to get out of it. She then decides if you have been refferred to the right place and if you have and need further investigation she referrs on to

Teir 2, where we are now,
A Senior Mental Health Nurse with experience and training in ASD [in our case], who took a mega history and did the questionairre. It is his job to compile all the evidence available on the child, like OT and SALT assessments etc.
When he has collected all the stuff he goes to the Psychaitrist and asks if they want to put the child on their list. If they say yes you move to

Tier 3 and go on the waiting list to see a psychiatrist.

few its almost exhausting to write it down as it is to live it.

Thanks for this. Presume we are tier 3 then.

We never really had history taken and questionnaires completed with anyone, our meetings were always more chats with no one writing down what we said. Even at the home visit there were no notes referred to or written down during the appointment. Presume something must be written down afterwards. How easy it is for us to access this information?

Has anyone else had experience of CAMHS assessments?