First GP Visit

[forrestgump]

Back from first visit to the GP. Not impressed. Ben had 6 sessions with Speech & Lanaguage Therapy earlier this year, as well as a detailed assessment by the Educational Psychologist, but neither of these were passed on to the GP. She has nothing on file at all. I explained about our concerns that he has AS but she seemed completely disinterested, saying "Of course, he's far to young to have a proper assessment at six. There are so many things going on in a young person's development at his age that it's very hard to pin anything down." She didn't ask about his behaviour or details of why we were worried at all. We've got to get copies of the S&L Therapy report and Ed Psych report and then she'll put in a referral to CAMHS, although she reiterated that they would think he's too young. Any thoughts?

[Karen A]

Back from first visit to the GP. Not impressed. Ben had 6 sessions with Speech & Lanaguage Therapy earlier this year, as well as a detailed assessment by the Educational Psychologist, but neither of these were passed on to the GP. She has nothing on file at all. I explained about our concerns that he has AS but she seemed completely disinterested, saying "Of course, he's far to young to have a proper assessment at six. There are so many things going on in a young person's development at his age that it's very hard to pin anything down." She didn't ask about his behaviour or details of why we were worried at all. We've got to get copies of the S&L Therapy report and Ed Psych report and then she'll put in a referral to CAMHS, although she reiterated that they would think he's too young. Any thoughts?

 

Hi.

Six is certainly not too young to be requesting an ASD assessment.In fact all current experts agree that early intervention is extremely significant in improving outcomes in young children with ASD.The early years at primary school are one of the most crucial periods for emotional and social development which is why it is so importnant not to let things drift..What is more difficulties that are not addressed can lead to stress and behavioural difficulties that result.

It took over three years for my Ben to obtain an AS diagnosis from when he was first flagged as experiencing difficulties at seven.So I can see nothing to gain from waiting.Also waiting lists can be lengthy so the sooner that a child can get on the list the better.

The fact that the SALT and EP have already seen your child shows that there are other professionals who should have been consulted before your GP decided re referral.I think it would be worth contacting them to request they forward reports to the GP too.

It would be worth checking whether the Specialist Team with responsibility for ASD assessments for children is based within CAMHS as it may not be.It is now recognised good practice that a multi-disciplinary team including a Specialist SALT,Paediatrician and others probably including a Social Worker and OT should conduct ASD assessments.You could face further delays if your GP is not aware and does a referal to CAMHS if they do not do ASD assessments.

 

 

http://www.asd-forum.org.uk/forum/Index.php?/topic/24987-class-observation-report/

I posted some links on this thread earlier that might be useful.

Karen.

Edited August 18, 2010 by Karen A

[cmuir]

Hi

 

My son was diagnosed with AS at 4.5. It was obvious from when he went to nursery that he wasn't like the other children and his behaviour was extreme! Our GP and HV treated me like a neurotic first-time mum that couldn't cope. They kept telling me R was going through the terrible twos - for over 2 years! Enough was enough and I wrote letters of complaint to them explaining that I felt I wasn't being listened to or taken seriously and it was their job to ensure R got the referrals he needed. They clock on a 9 and off at 5 and I was adamant that it wasn't a figment of my imagination. It was soul-destroying not being listened to. A few years on, I have some perspective on things - GPs are general practitioners and not experts. Some are very good at dismissing things (thankfully, some aren't!). My advice is to see another GP and not take no for an answer. It's not easy and is physically and mentally draining, but at the very least, your child is owed a referral for further investigation. Six is most definitely not too early or too young. From the age of 3+ things start becoming more and more obvious (developmental targets are set as guidelines ie a child should walk by the age of 1.5, talk by age XXXX, etc). I know that NAS told me on a NAS help! programme course that the average age of a diagnosis is something like 9. Have to say, I wonder how many kids are undiagnosed as a result of parents taking their GPs word on things!?

 

Caroline.

[Karen A]

Hi

 

My son was diagnosed with AS at 4.5. It was obvious from when he went to nursery that he wasn't like the other children and his behaviour was extreme! Our GP and HV treated me like a neurotic first-time mum that couldn't cope. They kept telling me R was going through the terrible twos - for over 2 years! Enough was enough and I wrote letters of complaint to them explaining that I felt I wasn't being listened to or taken seriously and it was their job to ensure R got the referrals he needed. They clock on a 9 and off at 5 and I was adamant that it wasn't a figment of my imagination. It was soul-destroying not being listened to. A few years on, I have some perspective on things - GPs are general practitioners and not experts. Some are very good at dismissing things (thankfully, some aren't!). My advice is to see another GP and not take no for an answer. It's not easy and is physically and mentally draining, but at the very least, your child is owed a referral for further investigation. Six is most definitely not too early or too young. From the age of 3+ things start becoming more and more obvious (developmental targets are set as guidelines ie a child should walk by the age of 1.5, talk by age XXXX, etc). I know that NAS told me on a NAS help! programme course that the average age of a diagnosis is something like 9. Have to say, I wonder how many kids are undiagnosed as a result of parents taking their GPs word on things!?

 

Caroline.

 

The assessment and diagnosis of children with possible AS in my PCT has passed in the last year from CAMHS to a new multi-disciplinary team.Since the change-over the new team have been swamped by referrals to the extent they can hardly keep up with assessments.The majority of referrals are not for children with ASD who would have previously been picked up by CAMHS or CDT.They are pupils at primary school many in year 5 or 6.The team then have the job of attempting to work through assessments in order to have support in place for secondary transition.

I am left wondering what would have happened to these pupils previously with some concern.

My LA is generally excellent in my experience.Although things are now becoming more difficult.We also found CAMHS to be very good.NAS now have a parent support worker based in the LA too.So if this is what the situation is like in my area I cannot think how difficult it is in some other areas of the country.

Edited August 18, 2010 by Karen A

[Tally]

I'm sorry to hear your GP did not seem very helpful. To be honest though, a GP is not the one you need to state your whole case to, as they are not in a position to diagnose ASD and many know very little about it. There has obviously been some kind of failure in communication, and hopefully once your GP reads the reports and can see documented evidence of concerns over Ben's development, she will be able to make an appropriate referral.

 

The good news is that you are getting a referral on to CAHMS for Ben. If they can't assess for ASD, they should be able to refer him on to someone who can. I would wait and see how you get on with CAHMS before getting too downhearted.

[coolblue]

I think the health service and education system are almost travelling in opposite directions, here.

 

I can understand why health practitioners are reluctant to diagnose children with poorly defined developmental conditions. The child might grow out of development delays; it's not always clear whether an intervention has worked, or whether the child has simply developed; and the wrong label itself can cause significant problems.

 

The education system, by contrast, is structured around a fundamental assumption that every child follows the same developmental trajectory - and if they don't then it's the job of the education system to get them back on track. So parents and teachers are getting stressed because the child is 'different' to his or her peers, and the only people who can explain that difference are saying it's far too early to make a diagnosis. Which, being translated by the teacher often sounds like 'there's nothing wrong with them'. It is then often assumed that if there is no [obvious] medical issue, then the child's difficulties must be caused by their home background.

 

The only way round this is to ensure that all GPs receive training in developmental disorders and all teachers receive training in SEN. Then the thinking might start to get joined up. Though I must admit I'm not holding my breath.

 

cb

[call me jaded]

The Ed Psych or the SLT can refer you on. I would see which one you can get hold of to see whether they think it's worth doing.

 

Where I live you can self-refer to CAMHS too, but I would definitely talk to at least one of the professionals first.

[trekster]

Back from first visit to the GP. Not impressed. Ben had 6 sessions with Speech & Lanaguage Therapy earlier this year, as well as a detailed assessment by the Educational Psychologist, but neither of these were passed on to the GP. She has nothing on file at all. I explained about our concerns that he has AS but she seemed completely disinterested, saying "Of course, he's far to young to have a proper assessment at six. There are so many things going on in a young person's development at his age that it's very hard to pin anything down." She didn't ask about his behaviour or details of why we were worried at all. We've got to get copies of the S&L Therapy report and Ed Psych report and then she'll put in a referral to CAMHS, although she reiterated that they would think he's too young. Any thoughts?

 

She doesn't know her stuff and seems like she doesn't see the point in a diagnosis. We had to pester my (now retiring this year) GP for 18 months before i got a referral. Autism can be diagnosed in children as young as 18 months.

 

http://www.autism.org.uk/our-services/diagnosing-complex-needs/about-the-nas-lorna-wing-centre-for-autism/the-centre-staff.aspx

Heres a quote from the NAS website on the Lorna Wing Centre (where autism/asperger syndrome can be diagnosed).

"The staff at the Centre are fully experienced with clients of all ages from early childhood, through adolescence, adult life and old age. They are equally experienced in all ranges of abilities from severe learning disorders to very high IQs. One special area of expertise concerns the problems that arise when an autism spectrum disorder is associated with one or more other developmental and/or psychiatric disorders. These combinations of diagnosis are often misinterpreted and cause great distress to the family."

 

http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-the-process-for-children/diagnosis-what-to-expect.aspx

Explains the importance of an early diagnosis.

 

http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-the-process-for-children/complaints-about-the-nhs-childrens-procedure.aspx

Explains what to do if you wish to complain due to your son not being referred for a diagnosis.

 

HTH

 

Dont take no for an answer, you know your child.

[forrestgump]

Thanks everyone for your replies, all incredibly helpful. I have photocopied all the paperwork to pass on to the GP tomorrow and will arrange a meeting with B's headteacher before the start of term to see if we can get anywhere there as well. Perhaps the EP can speed things up. Just becoming aware it's probably going to be a long old road. Went to the park with both little ones today and Ben made a friend in the playground, perhaps a year younger. There is a little megaphone style telephone communicator in this park, and as he had been shouting '######-bum-bum' down it to me about 5 minutes before, I was on tenterhooks when he pointed his new friend in the direction of it, but all seemed to pass off OK.