Has anyone any advice

[daniels-mum]

Hello everyone, I am fairly new on here but to give a very brief overvue of my situation I have a DS aged 11 and another DS age 1yr, also have a stepson age 9, I work full time and am from Leeds. This is a long post so please feel free to ignore it.

 

The problem (for want of a better word) is with my lovely 11 yr old, a more gentle and passive child you will never meet. Since he went to nursey school at 3 yrs there has always been the feeling there was something slightly amiss. His nursery teacher requested he went for hearing tests and Speech and Language Therapy which he did, after a few sessions this didnt really seem to come to much. He started school with no real problems but as he is such a quiet child I just think that alot of his problems went unoticed. Eventually when he was in Year 2 his teacher put him on the SEN register and got him seen by the Ed Psyc. Autism/AS was never mentioned then and again after seeing the Ed Psyc nothing really seemed to come of it. I was probably alot more naive then, than now and probably just accepted what they told me, after all they are the experts!!!!!!!! Then it was every year the same really, all his teachers thought there was something probably not quite right but none of them could ever put there finger on anything.

 

Fast forward to Year 4 when his teacher called me again as she was concerned about Daniel and wanted to refer him to Ed Psyc again. After full assesment with him and all the Weschler tests which he scored very low on with the exception of Maths, the Ed Psyc did say that he probably had Aspergers but he couldnt diagnose him, I would have to go through Camhs for that. It took about a year to get an appointment with them. During this time he has been assessed by the SALT for the LA and she has said he has significant social and communication difficulties and he meets the criteria for E Band Level 2 funding which he now gets, (6 units a week). He has since had the assesments with CAMHS and they have made the decision not to diagnose him as he doesnt fit all the criteria for AS. I am waiting for a full report from them but they state that he needs a referral to an Occupational Therapist as he possibly has Dyspraxia so I am now waiting for this. So far the Ed Psyc who has now left, the SALT and the Community Peadatricean all say he shows signs of AS and has social and communication difficulties but CAMHS seem to have ignored this and still refuse to diagnose him. The decision, although not unexpected was devasting as I just feel I am no further forward than 8 yrs ago. Daniel is to move up to High School next year, and whilst I am happy with where he will be going, I have deep reservations that without a diagnosis he will not be given the allowances he should have. He is very young and naive and probably has the mental age of about a 7 or 8 yr old and I worry already about how he will cope.

 

I desperately want to get a second opinion but dont know where to start, and who or where to ask to be referred to. I am happy to go private if that is what it takes but would also like an NHS diagnosis aswell as I think the LA would be more accepting of that. I am convinced CAMHS are wrong, has anyone had similar experiences in my area or can anyone recommend where to go next. I have had a few weeks off thinking about things as it was taking over my every thought and I wanted to give my baby some time but now I am ready to think about things again and try and get some answers.

 

Sorry this is such a long post, I have all these thoughts in my head once I started typing it just kept coming!!

[jo jones]

omg sumone else in my position,,,i fully understand how u r feelin as they wont dx my little one either?? so frustrating!!! worse thing is i work in autism myself so i know what i am seeing ??? but the so called experts know best innit????????? not jo xxxxxxxx

[dooday24]

hi i know exactly where u r coming from and dont know if u read my post on camhs on general discussion. we have had to put a complaint in as we hav had loads of probs with them and hav just diagnosed reece with mild learning disabilitys which is rubbish.

and now we have compplaind we hav got an appointment to see a psychiatrist fri (weired cos for the past 6yrs they cudnt find one for him to see and now ive complained he sees one 2 weeks later!!!!)

if u r not happy u r in yr rites to ask for a second opinion just ask for the head of yr camhs dept thats wat we have done

 

good luck and pm me if u want more info

 

love donnaxxxxxx

[Enid]

Hi, I had the same, my boy slid through primary, all of us knew there was something different but not what, he wasnt passive though, I wish! I began to suspect ASD and asked for him to be referred, salt, ed psych, autism outreach, senco, all agreed he was definately on the spectrum, CAHMS however said he didnt tick all the boxes, this after nearly two years! by this time he was in y7 at secondary and I think that sent him over the edge. I asked for a second opinion, my GP referred me to a neighbouring CAHMS, this did NOT make me very popular! but within a matter of a couple on months I received a diagnosis. So my advice is to ask to be referred for a second opinion. hope this helps. Enid

[dooday24]

hows it going

love donnaxxxxx

[warrenpenalver]

Do CAMHS have qoutas to fill??? Or are they run like the benefits system and the more they dont diagnose, the less money it costs them???? Seems stupid that they are ignoring thier own professionals.

[Elouise]

Have a look at Semantic Pragmatic Disorder and see if that makes you think of your son; its on the edge of the spectrum and whilst it does not 'fit' the DSM for Aspergers it is classed as a disorder in its own right.

 

CAHMS will not diagonose unless they are 100% sure they have the right disorder.

 

My youngest daughter has some of the traits, over tactile, collector of strange things, over friendly because she does not spot someone is not perhaps 'safe' etc; she also has an Ed Psych and we also did the dance through the system. I think because she does have two brothers who are in the spectrum people were willing to look at what she was doing over a period of time rather than dismiss her. She left with a tentative diagnosis of DAMP, she does not get DLA but it did help to access a lot of help in school for her. They thought Annie had dyspraxia but agian she does not fit the full criteria for that either. Bless her.

 

Sometimes a kid takes a pick and mix approach to DNA and can present with a mix of traits from various disorders making it hard for doctors who have to use tick boxes to find some place to fit them.

 

This is the support group online for semantic pragmatic disorder http://www.spdsupport.org.uk/

 

Annie was given the label of tentative DAMP because she did not fit anything well but clearly had many minor to moderate problems that cobeined caused her big difficulties in school just so we could prise extra help from the education authority who refused to move without a label.

 

 

[bikemad]

O my god....ive had a nightmare too with cahms n am waiting for the ados test to be done but after reading the stuff on that site it sounded like her son was a clone of mine!!!!!!