Sick of constant ASD testing

[debs40]

Had meeting with consultant clinical psychologist today at CAMHS.

I've had a difficult history with her as her service is rubbish - massive waiting lists, poor communication etc. She is also dotty and presents as uncertain and not particularly expert.

Anyway, after complaints about getting no help with anything whilst on the waiting list, and asking to be transferred out of the area, we got an appointment in January. She sees DS and confirms 'it (ASD)is very clear'.

I was a bit taken aback by this as DS does not present clearly at all and I felt that as she is a bit dotty, he acted in a particularly aspie way with her. I even wrote to her afterwards to put forward his unaspie points!!

Anyway, she agreed to do school obs. Those of you who know my posts will know that I have spent the last year trying to get school to take on board his problems and have had to badger them to do something. They have even failed to attend meetings with professionals before etc.

Things have improved since the Early Bird Plus course and my conatcting the head.

Psych tells me today how un ASD like he was but how she could see he had clear sensory problems. She prattled on about how well she got on with the teachers and how they were happy that he asked for help etc and how they didn't see any problems - despite the fact that they have now asked Autism outreach to come in and the Ed Psych??? She didn't even know this.

She also prattled on about good eye contact with his friends and not hitting out when he was jostled etc. Cos all aspies do that all the time

So, she says it's not straightforward - just as we said to start with. Bleeding hell what a waste of time.

The woman is horrible and I left in tears, sick of the intervention in DS's life by people who don't seem to be expert at this at all .

In the meantime, we remain on an endless waiitng list for ADOS etc.

Don't get me wrong. I don't want a diagnosis if there is none to give. I do want to feel confident that the decision will be reasoned and definitive.

I have asked not to go through dx here but to go to a referral centre in view of the fact that it is acknowledged his needs are complex. I've asked this before and been refused but what is the point at undergoing tests conducted by people you have no faith in when you know, whatever the decison, you won't have confidence in what they say and so will ask for a second opinion.

It's just constant, unnecessary intervention.

Hi debs - I don't have any advice (going through process myself with my two ds's - hard work and slow, slow process). Wanted to say that I hope you get answers soon and get help for your DS. Funnily enough our Physchologist always seem slightly dotty as well - a view shared by other people who have met her.

Take care and hope you will be ok x

Hi Debs, nothing to add really other than im going through a similar thing with ds at the moment too.

Ive been starting threads today, saying fucking and CAMHS in the same sentence a lot!

No suggestions im afraid, but know how you feel. I feel like telling them all sod off and stick the dx.

It was my visit to CAMHS yesterday that made me start my 'passing the buck' thread today.

A hot bath, glass of wine and we live to fight another day Debs. (Although im starting to doubt, that the fighting is worth it at the moment)

Hope you are ok Debs, im off for that hot bath.

I know....that is the hard thing. You raise something as a tentative concern, then lots of peoplem get involved and confirm it, then you have to convince school who don't care or understand and then after all the hard work, people say...look he's coping really well, what was the problem???

I just want them all out of my life for good...NOW!

Bloody babysitting tonight as well!

They move the goal posts Debs, at first is you dont know that he behaves that way as a result of anything. So ok you push for a dx, then when thats in sight, its we work on a needs basis, not a dx!

You spend so much time on appointments, whats the point, recommendations that are as good as useless. No one bothers to read reports.

I should be trying to cheer you up, but still feeling pretty raw myself. A good school/professional bashing is needed sometimes

Bath is ready now, good luck with your babysitting, might take your mind of it for a bit.

Thanks claw.... enjoy

Oh I forgot to add, the teacher suddenly had lots of visual timetables which were being used to remind the children what they needed to take for playing out... e.g picture of a sweatshirt....how fabulous says psychologist - making me look a paranoid loon when I say 'that's a first'

Interestingly, psych woman then says 'visual timetable goes up and DS already had his sweatshirt on but still went outside with the other children ...I thought....what is going to happen here.....but DS seemed to know he was wearing his sweatshirt and came back with his coat which surprised me'

Seriously, what were her expectations...??

Oh, and when we were talking about other children on the Early Bird Plus course who seemed to have problems with aggreession whereas DS was passive, she said 'it's all about your personality type'..... is it? Really? Is it not about having better coping skills or social skills or being better supported in your environment?

So she was surprised because he knew he was wearing a sweatshirt, gave eye contact to his friends, could ask a question in class and didn't thump someone who bumped into him. Is this woman working on stereotypes?

The whole system seems to be based on stereotypes Debs. Passive = coping. Ds gets himself into such a state on PE days to the point of feeling physically sick before i take him to school. But because he will get changed for PE, albeit very slowly and 'sulking', but he gets changes without refusing or a tantrum so he is coping!

Schools and professionals only seem interested if a child falls behind academically, they dont give a toss about their emotional or social well being, unless they affect others.

What worries me is that once ds has his dx and is discharged from the ASD team, we will have to rely on outside agencies going into school.

Outside agency will go into school. school will say 'he is coping very well', outside agency doesnt bother going back into school and you are left looking like you are complaining about nothing.

As you said earlier, he is not behind academically, he doesnt lash out at anyone, so he is managing, what is your problem!

I know Claw you can actually translate that into 'he is not causing us any problems, so what is your problem' - who cares if he is happy, doing as well as he could, understanding things etc etc

I was thinking about this yesterday Debs, as im in a similar position to you as usual!

I was thinking when ds have difficult understanding something, i break it down into smaller sections.

I am going to have to do the same with school. Autism covers a wide range of difficulties and is really quite vague.

So i am going to address the individual difficulties that make up autism iyswim.

For example eating/drinking, we are going to a feeding clinic and i will ask them to make recommendations.

Visually, ds is being assessed for Irlen Syndrome.

I am going to ask Paed for auditory processing assessment.

OT has already addressed sensory and writing difficulties and self harming and i should receive her report and recommendations next week.

and so on.

Oh did you take ds with you to this appointment in the end?

I put two pepperami and a packet crips and two choc biscuits in his lunchbox and he was happy with that as a lunch!!

I think you are right - it is a multitude of different little issues to address indvidually. I suppose the global 'label' if there is one, helps as shorthand (and statementing!)

He actually stayed for packed lunch in school?

Ds has complete control over what i put in his lunchbox (for now anyhow) its either that or he doesnt eat or drink.

Ive reached the conclusion that an autism dx for ds is as good as useless. Seems to be a whole bunch of disorders and syndromes in there.

Yes he did!!! That is progress. It has really helped that they have had the class TA spend only 5-10 minutes a day getting to know him over the last few weeks so that he know feels much more settled and able to approach her with concerns. So lunchbox of choice, a bit of bribery and knowing he could ask her questions seemed to sort the situation out.

I know what you mean about a dx. I think we would just like to get that off our list and feel the process is at an end now.

Brilliant news, that is real progress and you have something to work with now!

Thats what i thought Debs, we were reaching an end. Dx seems to be only the beginning and all referrals up until this point seem to have been the 'wrong' ones.

I am finding my experience with CAMHS a bit strange to be honest. After telling them that ds is very anxious in school, they have said they will not go into school, as they did not give the dx! Ds is having weekly sessions for the 'worries in his head' (most of which relate to school) but they will not make any recommendations for school!

Seems that if they give dx, they then do the follow up with school. Would this be good news for you?

I just feel that the particular service in our area has no particular expertise and the woman we have been dealing with is, on a personal level, quite an awful communicator. She is also full of her own self-importance but equally full of self-pity for her service's inability to cope with a waiting list. They have had to tender out the management of the service to another NHS trust which says it all about her abilities.

I suppose I just feel that if I have little confidence in the service's diagnostic capacity whatever their decision. I suppose if we are going to pursue the test, we just want it done once and don't want to be chasing a second opinion from a better service which will equally cost the local service money.

I think CAMHS just don't want to know about school as they focus on 'outside school' issues and see inside as the remit of the ed psych.

CAMHS told me they didnt feel ds displayed any social and communication difficulties (he doesnt have autism) and any social difficulties he was having were due to him being bright.

Old Paed a few years ago, told me 'there is no way ds has autism and dont let anyone tell you otherwise' after a developmental check.

OT told me sensory modulation disorder (not a diagnosis in this Country)

2 ASD specialists and 2 SALT specialists have told me, ds is definitely on the spectrum.

I gave up on a total accurate dx and focused on a label that would get him help and support. All i know 100% is that ds does have difficulties and lots of them.

Seems you have to diagnosis your own child and i really dont see the point of a label, if this isnt going to result in help and support.

I think you are right 100% when you say you have to get "focused on a label that would get him help and support".

I wish I knew what the label was as we just seem to have little bits of everything. I think this is not so bad when you are surrounded by supportive professionals. Our OT and community paed are tip top for example. The CAMHs team however are dreadful.

Did you see a programme a few months back on BBC which had a family with 'problems' seeing CAMHS and they were doing a puppet show for the family. It was just awful stuff.

Would also add that i think the label autism, is the systems 'cop out'. Rather than addressing the individual disorders, syndromes etc which make up autism, slap a autism label on a child and send you on your way.

Too true, too true, and you don't have to concede how much more complicated things are or that actually you don't know enough about things to help this individual child with their individual needs.

OT was very helpful when she thought she was working with 'sensory modulation disorder' the minute the mention of ASD was mentioned AND i moved Boroughs, she couldnt wait to pass the buck.

It now turns out, that new borough doesnt have sensory OT service and new borough would be happy to pay for ds's care to continue in old borough and they are now trying to 'play down' his difficulties, so they dont have to continue his care, so sly!

New Paed is brilliant and he is first professional i have meet, who isnt afraid to say that other professionals 'shouldnt be doing that' and telling them so!

No didnt see the programme, im a bit of 'hippy' parent i suppose, but find CAMHS with their silly little girl voices highly irritating! A puppet show takes the biscuit, although it doesnt surprise me, how patronising!

Told CAMHS that communication card system has failed due to the negative response he has received from staff when he tried to us them ie got sent to the Head Teacher for lying and received a sad face on his chart for using his card.

Now ds doesnt use his cards, is unable to speak up and is often blamed and punished for things he didnt do (it comes to light after that it wasnt him) and this must be adding to his anxiety and confusion.

CAMHS and how does this make you feel? it makes me feel that school are not understanding ASD as a whole and ds as an individual.

CAMHS do you feel confused! oh fuck off! (is what i feel like saying)

I know.....silly stupid woman we saw spoke deliberately slowly and quietly (so you feel like you're ranting if you speak with any speed in a normal tone) and said things like

'now you must pat yourselves on the back and say 'well done mum, well done dad' for all you have done for DS....maybe have an evening out......we forget to reward ourselves'

Er, no, we don't and I have to say praising myself for coping with this pile of shit I've been landed with (in terms of battling with a cruddy health and education system) is really not something I struggle to do.

The puppet thing on the tv was hilarious.....mummy rabbit says she is sad when peter puppy kicks the door down....why does peter puppy do it?.....mummy rabbit loves peter puppy very much' FFS the boy was about 9 and these were grown-up consultants sitting behind a one way mirror putting on a show for the parents and boy. If ever anything is going to bond you together as a family the hilarity of watching those prats might just do it.....

LOL shame i missed it!

The woman i see is like Mary Poppins on helium. I asked her to elaborate on 'do i feel confused' (now, yes as you are a little bit scary!) apparently as i had said that the school were confused and ds was confused, she thought that perhaps i was feeling a little confused! grrr stop analyzing me!

Personally i didnt think i could have made it any clearly, perhaps she was confused as to whether i was confused

well, even mummy rabbit can get confused sometimes