still waiting for diagnosis, not at all sure we are getting anywhere

[susiemumof3]

hi, i first posted back in august 2011 when we finally had referrals. we have now seen SALT, OT and a paediatrician several times and still no closer to finding out what is wrong. To be honest j who is now 10 is seriously fed up of all the appointments and i am losing patience. should it be taking this long? The blame for all j's difficulties are still being placed at my feet and although some areas are improved, he is not happy and i don't know whether i should be pushing this through the gp now. it's so difficult to know what to do for the best. Still no problems within school hours and any problems which i feel i need to inform the school about are responded with "I would just ignore it, he's probably doing it for attention." We will be looking at secondary schools come september and i for one am petrified. :-(

[trekster]

Have you contacted your SENCO or local disabled childrens group?

[susiemumof3]

Senco is most definitely not keen on me pursuing a diagnosis. i have had several meetings where i have come away frustrated, teary and depressed. i think she believes me to be slightly neurotic as j is an 'angel'' at school, although she has seen his outside behaviour.

[smileyK]

SENCO may not be 'keen' just keep being persistant and keep pushing as my mum had to do 'same' for me over dyspraxia diagnosis as SENCO classed /branded my mum as OTT mum making up difficulties /issues alongside paedtrician! XKLX

[Lyndalou]

Apart from the different behaviours between school and home (which is quite usual in a child with ASD), what are the reasons they are giving you as to why they feel that an ASD diagnosis is inappropriate? They can't just say this is what they think without giving some explanation.

[susiemumof3]

they say he is fine and that i should stop looking for things,

edpsych report indicated nothing of any concern

salt indicated problems with short term working memory and reluctance initially to make eye contact. some difficulties with literal interpretation was picked up but not highlighted as a problem.

not had ot report yet, but she did work with him on shoelaces and cutlery usage.

we are attending family therapy sessions which i find extremely unhelpful as j will listen to their suggestions for his outbursts and then quote them back at me as excuses for his behaviour.

i go though, as we have been told to. Of course if this all comes down to a parenting issue, at least i am doing all i can to rectify my faults as a mum.

[trekster]

Would the family therapist support pursuing a diagnosis of ASD?

[susiemumof3]

no, as j will show eye contact and the therapist said asd will not make eye contact. however i recently learned his eye contact actually consists of him staring at a space above someone's nose which gives the same impression!

[trekster]

She doesn't know what shes talking about I know a number of people who can make eye contact or at least appear to do so including me.

[susiemumof3]

problen is, i am no expert. i teach adults with varying needs and am very aware of difficulties facing adults with asd. children however i am not so sure of. thus far i have placed my faith entirely in the system, assuming that if there is asd they will find it. my faith is waning now when over 20 months later we have got nowhere.

[Lyndalou]

I can assure you Susie that at 5 yrs old my son can now make excellent eye contact. It is one of the reasons that I believed that the Paediatrian was actually wrong about an ASD diagnosis in my son's case although back when he was just over 2 yrs old his eye contact was quite limited; mostly fleeting or he looked at us sideways. His eye gaze over time became longer and more direct (too direct) although there are times that he still won't make eye contact when he wants something and instead tugs on me or makes odd noises.

 

The actual 'symptom' regarding eye contact is 'inappropriate' eye contact. That can mean too little or too much. So the child might avoid eye gaze, make fleeting eye contact or stare or not look at you when you would expect them to. I can remember clearly as a child flicking my eyes back and forward between the eyeballs of the person I was looking at as I couldn't figure out how to look at them. I was always being told to look at someone when they were speaking to me so I tried my best to do it and started looking at a point between their eyes and I often went cockeyed! Part of the problem was that I was unsure how close to stand to another person - it's easier to stand further away!

[susiemumof3]

i must apologise for my appalling typing errors. i am using a tablet and despise not using a keyboard. i actually asked his teacher at a meeting once whether he made eye contact or not. his teacher last year informed me that eye contact is not a birth skill and it must be taught. this year's teacher replied, "I don't think you should really be looking for signs of autism, trust me, he maay have some autistic traits but you certainly won't get a diagnosis'. needless to say i was astounded. who knew teachers were now medical experts!

[smileyK]

He obviously isn't 'fine' as stated and is currently presenting difficulties and has 'issues' which need looking into - investigating on further basis /level! Professionals make me 'chuckle' like parents have 'nothing' better to do with their time /energy go round looking for 'issues' /difficulties! Really doesn't add up make proper sense! I would protest stamp feet be 'forceful' go with your personal opinion! And you know your son best his issues/difficulties ask for second opinion or to see different professional even! I would really 'dig' 'your heels in' will be worth the fight/battle my mum WON battle/fight with me! Remember you are your son's 'voice'! Don't lose hope or faith don't let me side track you or question you're own abilities /standards as his mum! I think comment/statement the teacher made is truly utterly appauling disgusting to make! I would be shocked traumatised and horrified! Don't let any of comments/statements/attitudes put you off from 'fighting' for what is 'rightfully' your son's needs /issues! You live with the 'true harsh reality' not 'them' -good luck! XKLX

[bed32]

I'm sad to say that there are a significant number of parents who do go around seeking a diagnosis for somewhat dubious reasons, either to explain what is simply bad behaviour, or to gain some advantage (financial or otherwise). Unfortunately that makes it difficult for genuine cases to get the help they need.

 

In order to get a diagnosis you need to get a referral to CAMHS, I think this can come from your GP, school or the Paediatrician - if school are not helping then it may be that the easiest route is through your GP. If your GP is not sympathetic then try asking around locally to find one who has a good understanding of special needs and consider switching to them - I think an understanding GP is essential as they are a major gateway to NHS services.

 

Alternatively you could go the private route - an independent CP/EP will not lead to a formal diagnosis but will be able to give you a much better idea about what his underlying problems/strengths/weaknesses are whether or not he needs a diagnosis.

 

For us it was the work with the independent Psychologists that gave us, and the school, the most insight. Although we have a formal diagnosis from CAMHS that is largely irrelevant in the day-to-day issues of his education

[susiemumof3]

it is actually through camhs that we have the family therapy sessions. they were initially seeing him due to excessive fears and worries but he will mask them when questioned so he doesn't appear stupid. He won't even talk to his dad about them. so then they created these family sessions. We had an awful morning. He was melting down before school and it was horrendous for us all.

Edited March 13, 2013 by trekster