1st Appointment with Community Paed

[Katiebell]

I know this sounds a bit strange but T. has got his first appt with a community paeditrician next week and I don't really know what to say the problem is everything seems a bit vague.

 

Do I suggest that I think he may be autistic as he fits beautifully amongst almost everything that has been written on this forum or do I pretend that I have no idea of the traits of autism and let the proffessionals do their stuff.

 

I have a feeling that doctors' don't like it when you have already diagnosed you child yourself, but I also want to make sure that they are aware of some of his strange behaviour that is obviously associated with autism.

 

Does this post make sense?

[chriss]

I felt the same way before my son's first appointment with his Paediatrician. I really didn't know what to expect and at that point I was in denial that anything was really wrong. I only went because his nursery pushed me too - despite 4 years of sleepless nights and tantrums (DUH!).

 

As it was the Paediatrician gave my son a thorough physical examination and asked a series of questions. He was definitely following a certain pattern of enquiry. However, I answered a lot of the questions completely wrongly. For example, he asked if C had any odd collections and I said no. Later I remembered the all plastic jewellery he liked so much and wore most days quite obsessively but as this didn't jump immediately to mind as a collection I didn't mention it. Neither did I mention his obsession with jigsaws and ability to read some words at the age of 2! Even though he asked if my son had any strange behaviours.

 

The outcome was at that meeting he only said my son had some autistic traits but nothing clear cut. It was 2 years later when my son was having an awful time at school and 2 or 3 meltdowns a day that he was finally diagnosed with Aspergers syndrome. My unwillingness to accept that anything was wrong the first time we saw the Paediatrician meant my son didn't get the support and understanding he needed at school for his first year and a half there, and we missed out on benefits we could have claimed and should have claimed as his behaviour meant he wasn't able to put up with nursery for more than a couple of hours so I had to give up my job.

 

I think it is good that you recognise your son has some autistic behaviours. The Community Paediatrician will follow a strict diagnostic procedure and decide if he has enough to warrant a diagnosis. All you can do is give as full a picture of your child and his behaviour as possible.

 

By the way I have read since that if a professional says your child has some autistic tendencies than you should push for a clear diagnosis as that means he has some problems but with such a vague "diagnosis" your child is not going to get any support or help.

[shortie]

I know this sounds a bit strange but T. has got his first appt with a community paeditrician next week and I don't really know what to say the problem is everything seems a bit vague.

 

Do I suggest that I think he may be autistic as he fits beautifully amongst almost everything that has been written on this forum or do I pretend that I have no idea of the traits of autism and let the proffessionals do their stuff.

 

I have a feeling that doctors' don't like it when you have already diagnosed you child yourself, but I also want to make sure that they are aware of some of his strange behaviour that is obviously associated with autism.

 

Does this post make sense?

 

When i went for first pead app,i wrote a list before i went of all the "unusual" things DD did so i wouldn't forget,she was 2 1/2 at the time.I listed things like walking on toes,lack of eye contact,lining things up,no interaction with other kids etc i found it really helped even tho she had a huge meltdown while we were there he agreed she did have autistic traits, and she wasdx 4mths later

[pleasehelp]

From bitter personal experience, I would probably say something along the lines of 'get lost and please refer us to CAMHS where my child stands a reasonable chance of appropriate assessment' though things may be different where you are. Unfortunately our paed was pretty much oblivious to the implications of all that I had observed in my youngest son literally screaming that he's somewhere on the spectrum. Sorry that's a bit on the negative because Im sure not everyone has this experience. Do have a good think about all the things that make your child unusual and likely to fit with an autistic spectrum diagnosis (or any other for that matter as a few other conditions can appear quite similar), just anything you think is pertinent really without appearing like you have made up your own mind already because this it would appear is their pet hate because many have an overinflated opinion of their own expertise and you are after all ONLY the parent and therefore an ignoramus-oh dear there I go again, sorry :S Seriously though list everything in writing in advance to refer to or if you just feel the right questions arent being asked in the first place you can give to them and ask that they please read if all else fails which should help I would think. Good luck anyway and if you dont get anywhere be prepared to dig your heels in for CAMHS referral instead if necessary.

[Katiebell]

Hi all

 

Thanks for your replies, its nice to know that I'm not the only one feeling like this again!

 

T is 8 and it has taken me 3 years to get this far so I really don't want to mess this appointment up.

 

appearing like you have made up your own mind already because this it would appear is their pet hate because many have an overinflated opinion of their own expertise and you are after all ONLY the parent

 

This is what I'm worried about. Originally it was thought that T. was dyspraxic (by school), but an occupational therapist dismissed this within minutes of seeing him with an air of superiority, so i don't want to suggest a diagnosis. However, my GP dismissed autism purely because T. is quite cuddly with me. It was only when I told him that I am a teacher (not any more) that he sat up and realised that I actually might know more about autism than him. I will take your advice and write a list of T's oddities and use it if I have to, at least then I will feel more prepared. His appt is on the 5th Feb so I will keep you posted.

 

I feel like decisions are made by the professionals on such a small snapshot of his life. Today T. is being seen by SALT at school (I don't even get to speak to her) and at the moment he is having a good phase, if only she had come to see him last week at his worst.

[MichelleW]

I had an experience very much like "pleasehelp". I initially thought he was deaf, but his hearing test was fine, and gradually I realised he was autistic.

 

I noticed a lot of signs when J was 18 months-2 years. Things like hand flapping and watching things spin, severe distress with changes to routine, obsession with water, hypersensitivity to sounds, but unresponsibve to his own name being called, no imaginative play, lone playing (as opposed to playing with other children) along with complete regression of speech. J could be cuddly when he wanted to be, and would have eye contact when he wanted it. However the first paed I saw completely dismissed what I said as she managed to get eye contact with him. Though she did say that the hand flapping she observed "was a bit unusual"!!! Her actual words were "he can't possibly be autistic - I got eye contact with him"

 

Anyway, at 4 and a half he was seen by another paed who diagnosed him as Aspergers and a month ago he was seen by a third paed who confirmed my original belief, and he has now been diagnosed as moderate autistic at 6 and a half.

 

As far as the meeting goes, make sure you take a list with you, as it is easy to forget things when you are in there. I also agree that some "professionals" don't like it if the parents appear to know more than them. The best thing is just to be honest about your observations, maybe keep a detailed diary for a while.

 

And lastly, if you don't get anywhere the first time, don't hesitate to go for a second, or third opinion!!

[Kathrynh]

When I first saw a peadiatrician I started by saying that I felt that my son was autistic. We then discussed him for a while and the peadiatrician said yes I agree with you and I'm prepared to give him that diagnosis. Earlier in the year I had met with the area Senco who dealt with his nursery. Again I suggested autism and she agreed with me. The same when he saw a speech therapist before his diagnosis. I said autism she agreed with me and said he should see a paediatrician. My son is very clearly autistic and at the severe end of the scale. However my point is that with all the professionals I saw I was the one who suggested autism and not them. I wonder if they would have given me that diagnosis so easily if I hadn't mentioned it. I felt like they didn't want to upset me by mentioning it and they seemed relieved when I did.

[Katiebell]

Hi everyone, here's the update.

 

Really impressed with SALT, she spent most of the day assessing and observing T. at school and spoke to me on the telephone at quite great length. Her conclusions were that T. is somewhere on the autistic spectrum possibly AS. Hoorah I thought we've cleared one hurdle towards getting the help at school that T. needs.

 

On to the Community Paed appointment. I went armed with my list of oddities. The Dr didn't seem to know why I was there so I had to initiate my concerns that T. may be autistic. After explaining his behaviour she examined his ears and his tonsilles and said he may have some autistic tendencies, and needs to see an Ed Psych. The problem is where I live it is virtually impossible to see an Ed Psych, T. has been on the waiting list for 3 years with no guarantee that he will ever be seen. I explained the situation to her and she said perhaps a parent could just help him at school then. See you in 4 months.

 

I felt quite let down. I don't know what I should have expected out of this appointment but I had hoped for more than a 10 minute chat and thought perhaps she could organise an Ed Psych other than handing the problem back to school.

 

Any suggestions for what to do next?

[lisa35]

Hi, I wrote a list of all my sons quirks, and posted it to the paed before we had the appt, dont worry that you re treading on toes, at the end of the day I feel we have to be pushy, and gett he best for our kids!

Lisa

Good Luck , our paed was fab, referred him straight away to SALT, physio, clinical pysch, we were very lucky

The assessment has taken almost 2 yrs, and we have an appt with her march, Im hoping that we will get some sort of "name" , but not enough traits to be dx aspergers

lIsa xxxx