Diagnosis battle

Hi,

Just read your post and I really feel for you.  I am a mum of a 17 year old who has only been diagnosed with autism for the past 6 months.  I always knew he was different but school and GP's would not listen.  His last 3 years of secondary school were sheer hell!!!  After speaking to a different GP at our practice 12 months ago, she reluctantly referred him to camhs.  I waited ages for an appointment and ended up ringing to see where he was on the list.  I got to speak to someone in the Autism team who told me that looking at the GP referral they didn't think that my son had any need for an assessment.  I explained to her the concerns I had and we discussed some of his behaviour as a child and she then decided that he did in fact need assessing!!  She rushed an appointment through for him.  One of the team came out to my home to see us and was with us for about one and a half hours.  It only took that amount of time with my son for them to push a full assessment through.  We got the diagnosis last July.  He has Autism.  He has significant impairment in all three of the triad of impairments,  Sensory issues and problems with theory of mind.

My point is, keep pushing.  We know our children better than anyone.  I feel guilty for not pushing this harder sooner.  If I had, my son may have got through secondary school without all of the problems of being labelled a problem child.

Don't take no for an answer and I hope all goes well for you and your son

Jane

And therein lies proof that the initial tactic of many GPs is to fob parents off...

I spoke again with the GP and seemed very suspicious about how i knew so much. He quizzed me for a while then agreed to refer my son back to CAMHS. So fingers crossed we will get somewhere this time!

Thank you everyone for your support, I have a feeling I will be visiting this forum often! 

Emma

Have you had any thoughts on what youre going to do?

I would do as PP says and complain the to practise manager, apart from anything else, what if another mum who isnt as aware as you are goes fro help and their child is also ignored.  Perhaps see a different GP at the practise - or change to another practise. Alternatively make an appointment and sit there and tell him/her that you will not be leaving until he/she agrees to refer your child - who is suffering - for assesment by professionals who know what they are talking about... 

I wish someone (maybe NAS????) would convey to GPs what it is like to be the "different" kid at school.

I understand the 'labelling' argument perfectly - and on its own it makes good sense not to lumber a child with a label, especially given that autism still stigmatises.

But having gone through school (and most of my adult life) without that diagnoses, I can witness to something the GPs cannot see.

Being the odd, awkward child who doesn't fit in with his/her peers, cannot adapt properly to the "rules" but has no explanation other than the inevitable "mental" labels.

I think if parents could just point out to GPs who come out with such platitudes, the evidence out there of so much needless suffering that could be alleviated a little by having the diagnosis.

But then, for some strange reason, GPs all seem to be insensitive dullards, who think their professional knowallism takes priority. So agreed it would still be hard to elicit any help from them. Despite their so called oath, I don't think many GPs really care a toss about their patients.

Hello,

I had a similar experience with a GP when my son was 7 and his school expressed concern - my GP at that time wouldn't refer my son to psychology because he was against 'labelling' children that young with a diagnosis. I went to another GP and got referred to a paediatric consultant (who was NOT a specialist in ASD or child psychology) - who suggested that my son had 'developmental delay' and would grow out of it.......well, he didn't and the difficulties became more pronounced as he got older, also the stress and anxiety of coping at school without support.

It wasn't until my son was 12 that we were able to get a referral for ASD assessment, due to moving to a different area and having a more open-minded GP. He was diagnosed as Asperger's.

So, if your GP is not helpful, and not listening to your reasons for asking, which as you say are backed up by a letter from the Head Teacher - have you considered speaking to a different GP? Some practices have several different doctors and you may not be obliged to make appointments with the same one every time.

Your concerns are real, and you have the right to ask for a referral - whatever the outcome, you & your child can have access to help and support when it is really needed, ie. early in life.

Best wishes,

T 

No matter what the funding situation is, your child is entitled to a referral.  Complain to the practice manager if necessary and if that gets you nowhere go upwards to PALS.