Had 1st pead appt - do you think this is positive?

[davers79]

I took DD (age 10, almost 11) to see the pead today for the 1st time. She had told me it would be a 1hr appointment so I had high hopes that in that time she would go into lots of detail - in the end we were in and out within 10mins?!

 

Anyway first of all she spoke to DD, asked her questions about which school she went to, who her teacher was, did she have brothers and sisters (DD paused and couldn't answer fluently without a prompt from me), does she have any friends (first of all DD said yes but then couldn't name anyone), does she like sport (DD said no which is true), when was she going to do her induction day at secondary school (she instantly answered the correct date but couldn't then answer the names of her friends who were also going to the same school) and when was sports day this year (said started to ramble about last years sports day that had to be cancelled for the lower years because it was too hot!)?

 

The pead said she agreed with what I had put in my letter (I had said I thought she had ASD/aspergers traits and tendances and in particular problems with semantic/pragmatic language) but she couldn't make an official diagnosis based on my observations alone. She said there was nothing more she could do unless her school picked up on any problems and referred her for further assessment.

She said she couldn't refer her to SALT because she was too old - even though my main concerns are her use and understanding of language, very literal, pedantic, speaking in statements, quoting tv adverts, going off track not answering the question asked, not understanding the important meaning of books etc, instead picking up on the irrelevant points etc.

 

DD was on good form though and demonstrated exactly what she is like when answering the questions the pead asked her and was fidgety throughout the appointment, rumaging through my handbag for no reason etc. Also the pead was running a bit late and that started to stress DD out a bit before we went in there - she clock watches!

 

So shes going to write a letter back to the GP and copy me in. She said I could then take a copy of her letter into school and see what they say/do. She mentioned School Action and IEP and asked if DD had one. I don't think she has, no-one has ever mentioned it to me, although she did seem suprised that DD had been taken out of class into a smaller group for help with reading last year in year 5 without me knowing anything about it?

 

She asked if we had any family history of ASD, I said no nothing official but I can see some traits in myself and my mum. She dismissed it and said everyone has some degree of traits.

 

I'm kind of happy that she had obviously read my epic 4 page letter and took my concerns seriously so she didn't dismiss us completely, but I am kind of suprised (maybe wrongly?) that she isn't referring DD for further assessment / input from other areas.

 

I'm slightly confused, does this sound like a positive appointment? Would you be happy with the peads response - what would you do next?

 

Thanks

 

 

 

 

[justine1]

Hi

Very confused What does she mean by furthur assesment?Will it be with her again?I am not sure but if you were only there for 10min,its hardly long enough for an assesment????

 

My sons first appt was just over an hour,she asked loads about how he was as a baby,like a year by year diary of how he was right up to how he is now.In between the first and second appt she contacted the school to get their views.She then sent a first letter stating he has social and communication problems and that she would do a second assesment to come to a diagnosis.Second appt was nearly two hours,she asked me whats happened since the previous appt(which was about 2mths before) and repeated lots of info I gave before,then for an hour she asked his questions and did some "puzzles" where she would briefly show a block sequence(on paper) then he would have to create the same sequence from proper blocks after she has hidden the paper.Then a picture of the seaside where he had to say what he can see.Also had to answer questions like things that are similar etc.Like how is a bus similar to a car(they both forms of transport)he didnt know any of that!In the end she said he has autism.Then I got the letter confirming this a few weeks later.So all in all the whole process was 3hours but took three mths from start to finish she got lots of info from the school,that helped.

[emmasmum]

How ridiculous! I'm now wondering where you live as it sounds like the paed my daughter was seeing from age 6 to age 8ish - as useful as a chocolate teapot. Insisted she had dyspraxia even though physio/ot assessment ruled it out and said she was "too sociable" to have Aspergers.

Roll onto age 12ish when I contacted her to ask for a referral for an assessment for social communication disorders - she said nothing more she could do - GP would need to refer her to CAMHS - he did and finally, at age 14, she was diagnosed with Aspergers!

She did see a speech therapist as part of the assessment - at age 14, so your daughter isn't too old.

It isn't down to school to refer her either. Our paed kept saying we should see the educational psychologist but they can't diagnose Aspergers and, in fact, a few months before we went for the assessment told us it was highly unlikely she would have Aspergers!

Makes me so cross.

It does depend on the area you live in but my advice would be to go back to your GP. Tell him the paed agreed that your daughter has problems but said she couldn't help. Ask him to refer you to CAMHS or whoever does the diagnostic assessments in your area. It probably comes down to funding or something stupid - if paed refers she pays.

 

You could also ask NAS for advice.

 

HTH

Carol

[chris54]

As I have said many times things are done very differently in different places.

 

Where we lived at the time, assessments, diagnosis were done by a joint team that did not normally include a pediatrician, just about every one else but the pediatrician was only involved after the diagnosis. The referral to the joint team in our case was by the Educational Psychologist. The final diagnosis was made by a Consultant Clinical Psychologist.

When my son did see the pediatrician she had very little to add other than some dietary advice.

 

The point of what I'm saying is it sounds a bit to me that the referral to the pediatrician may have been the wrong move, who made the referral and why?.

[davers79]

Thanks everyone, everything you've all said re-inforces my doubts about what she said

 

Carol - we are in west sussex!

 

I get the feeling this whole process is going to be full of frustrations and all the responsibility is going to lie with me to get referrals etc.

 

We got the referral to pead via our GP. I didn't know where to start so wrote a letter to the GP setting out all my concerns and she referred us, didn't give any options to see anyone else but I guess it was a starting point.

 

I'm not giving up hope, I'm going to wait for the pead's letter and see what she says then take it from there.

 

Thank you

 

 

[chris54]

Just remember when an appointment was made to see pediatrician it was with the wrong one, a mix up in the office, we needed to see the one that dealt with Autism so had to come back to see right one. The first one said he could see us but it would be a waste of time as he know nothing about Autism.

[Suze]

Hi, have the school flagged up any concerns of their own , or was the visit to the pead done under your own initiative?

 

it would help a great deal if the school had concerns.

[Sally44]

See what the letter to the GP contains. If it backs up your concerns that is very useful.

Then you could make an appointment to see the Head and talk to them and ask them to refer your daughter to the SALT and the EP. If school refuse you can still speak to the Educational Psychologist yourself and the Speech and Language Therapist. Although they do need school to ask them to observe and assess your daughter (because it comes out of schools budget), if they agree that this sounds like she needs to be seen, then they can discuss this with school.

 

Although it is useful for school to have concerns this is not the only route. I don't understand why this paediatrician is waiting for school?? So also make an appointment with your GP and see if they can refer you to a SALT and clinical psychologist.

 

There are two pathways that can be separate or intertwined. One is via Education ie. school referal, Educational Psycologist and referal to NHS SALT. Or it can be via Health ie. GP referal to Speech Therapist and Developmental Paediatrician and Clinical Psychologist. Usually it is a combination of the two. You could ask both the GP and the Educational Psychologist what the pathway is. In my sons case he was referred by school to the Speech Therapist, who referred him onto the Communication Clinic at the childrens hospital. School also referred him to the Educationa Psychologist and at the Communication Clinic he was seen by the Developmental Paediatrician and the Clinical Psychologist. He was also referred by the DP to the Community Occupational Therapist.

 

As you have already noticed, you will be the project manager!

 

It might be helpful to speak with the National Autistic Society for advice, or IPSEA.

[davers79]

Hi, have the school flagged up any concerns of their own , or was the visit to the pead done under your own initiative?

 

it would help a great deal if the school had concerns.

 

 

It was my original concerns that I talked to the GP about and then the GP referred us to peadiatrician.

 

I spoke to school a couple of weeks ago (teacher and SENCO), they pretty much dismissed my concerns "because Chloe has a sense of humour she can't be on the spectrum"!! The only thing they did agree on is that she is very literal and that shes socially immature.

 

 

[jo4themo]

If you are not happy with your paed you can ask for a second opinion. When N was first referred to one (by our fantastic health visitor) the paed was more interested in Ns large head than the fact she wasn't walking, or even "crusing" around the furniture at 2 and a half! After 3 sessions with her - she measured Ns head every time although I had told her that both me and my dad have large heads - we asked our Health Visitor if we could have a 2nd opinion. We were then referred to a fab paed in another area who actively started looking for a reason for her delayed mobility (back then this was the only real sign something was wrong although she did have various stims, albeit quite mild ones). 2 years later, after several blood tests, an MRI and x-rays I asked him if he thought she was ASD - her behavior had deteriorated by then and her stims were way more obvious - (after I had seen a boy on TV who displayed a lot of characteristics similar to N) and he agreed and arranged for her to be seen by the assessment panel, and 6 months later she was dx with AS.

 

[emmasmum]

When we first asked our GP he was going to refer us to paed also. However, when i told him what she had said he referred us to CAMHS instead.

 

My daughter's primary school maintained all along that she was just a loner, a daydreamer, lazy and that she always had lots of people to play with. (my daughter told a very different story and to this day we don't know why they made it up). I've obtained my daughter's educational record (we are going to tribunal for statutory assessment) and in it the primary school had recorded that ADD and Aspergers had been ruled out!!

 

Follow your instincts - you know best. It does vary from area to area as people have said and NAS (or a local autistic society/NAS branch if you have one?) might b able to advise you on how it works locally.

 

We're in Hampshire by the way so probably not the same paed :0)

 

Carol

x

[rustysaddle]

Hi, I am of the opinion that the Pedeatrcian does not usually do the diagnosis. My daughter 10 has seen one numerous times, they were looking at genetic issues as she has a duplex kidney, complete red herring. After 5 years of hospital appointments and her with depression, we have finally got to see the consultant in Poole.

 

In our area the clinic sends a AS form to the school and the parents to fill in. Once done they are then sent to the clinical physcologist and an appointment is made, there is a waiting list here of 18 weeks. The best person I think to get on side is the educational psycologist, the school have always seemed to have their own agenda in my opinion, but always be nice to the school, if they get upset with you they have so much power to make life difficult, .

 

Jas has no friends, is bullied and teased every day. I so can't wait until next week <'> and I hope you find the results your looking for, be patient and keep on at them, go back to GP and try to get to see Paedeatrician again and just ask to see the clinical phsy (sorry spelling - long words ahh).

 

When I saw the P last time she told me that everyone was on the autism spectrum and flung her arms in the air, ummm, about as positive as your appt, but keep going...