First appointment advice

[concernedmummy]

Hi all,

I have an appointment for my son to see the paediatrition for next week, I am a little concerned as I spoke with another Mum a couple of days ago who's son sees the same consultant and she warned me that this consultant doesn't believe that a child can be assessed at my son's age (26 months). This lady was told to bring her son back after he had started in full time school, which she did and he was diagnosed then.

I would greatly appreciate any advice on what I can say to ensure that my son gets assessed now as opposed to in 2+ years time.

Many thanks in advance

[chris54]

First of all I assume we are talking about ASD.

The whole diagnosis proses can take a long time. In most cases it is done by a team of people and not just one person. One Person pulls together all the information from the different disciplines and makes a final diagnosis. This person is often not a pediatrician but a Clinical psychologist. But this is different in different areas depending on where you live.

Each case is different and I would wait and see what the pediatrician says.

26 months is young for a final diagnosis, although it helps, a lack of a diagnosis does not mean that adequate provision cannot be put in place at, say, preschool.

 

As for what you say, all you can do is tell it as it is. He/She will probably ask you why you have come to see them. Was it a referral from you GP or some one else. What did this person think/say about your concerns. Think about what your concerns are. Perhaps make some notes. Just the proses of writing thing down can clarify in your head what you think.

And once down on paper you will be surprised by how much there is to say.

 

 

 

[concernedmummy]

Hi, thanks for the reply, yes it is for ASD.

I asked to GP to refer following advice from my sister in law (she is a paed practicioner), my step son has aspergers also so there is a family history.

I appreciate that at his age there will be a fair amount of multi disciplinary assessment required, my main concern is what I do if the consultant outright says he is too young to start being assessed???

I have read through a fair amount of info and I am well aware that the earlier he is given help the better it will be for him.

 

I think that I will write down some of my concerns as well as some other things I have learnt. I am hoping my sister in law will be able to attend the appointment with me, then she can explain what her observations have been.

I suppose that I am just anxious that I get the help he needs.

 

[bikemad]

I first asked for help with my ds when he was 2 1/2 but they wouldnt help until id nagged n nagged n eventually at the age of 7 began the process and we are still in the process of seeing people n getting dx's.

[concernedmummy]

Thanks for the reply bikemad, what you have experienced is what I am hoping to avoid. I would like to have info to hand that refutes any argument that he is too young for assessment to begin now. I am hoping that as there is a family history that my concerns will be taken seriously.

[A and A]

Hi all,

I have an appointment for my son to see the paediatrition for next week, I am a little concerned as I spoke with another Mum a couple of days ago who's son sees the same consultant and she warned me that this consultant doesn't believe that a child can be assessed at my son's age (26 months). This lady was told to bring her son back after he had started in full time school, which she did and he was diagnosed then.

I would greatly appreciate any advice on what I can say to ensure that my son gets assessed now as opposed to in 2+ years time.

Many thanks in advance

Hi there we have a ds aged 2 years and 8 months and we had our first assessment on monday with the paediatrician at our child development centre as there are concerns that he is a asd child, the paediatrician was fantastic listened to our concerns and what we had to say and took a history from us on Liams health and development and took measurements such as height, weight, leg length and head circumference, and he agreed that Liam does need further examination and assessments, so he has arranged blood tests for fragile X and other things and wants Liam to have a muscle test and possibly a mri scan at a later date, and we also have physiotherapy, speech and language therapy, and they are wanting to see Liam at the child development centres nursery to observe him there, so all I can say is don't give up and remember to fight for what u believe in and we have, just hope u have a great multi discplinary team like we have.

 

Take Care

A and A

[Sally44]

TBH, and hopefully avoiding upsetting any other parents out there, I think alot depends on how your child is when you go to the paediatrician. If your child is more obviously 'autistic' at an early age then you are more likely to get interventions and even a diagnosis at a younger age. If your child is verbal but is showing traits, then they may take longer to come to the same conclusion. This always strikes me as rather odd, especially as they keep bringing up these new initiatives to 'recognise' ASDs at an earlier age. So that does beg the question as to who is benefitting from waiting?

I totally understand your concerns, and I myself first raised my own concerns for my son at age 3 and was assured that the behaviour I saw was 'normal'. But although my son was verbal he was echolalic with no social skills or interest and had a really hard time in nursery. I did consider holding him back a year from starting school, but that would have involved another year in nursery which was not working. So I told school of my concerns and after 6 months in reception they asked for my agreement for him to be observed. It took 2 years to get a diagnosis and a further 2.5 years on top of that to get a Statement. However I do believe the system intially failed him because he is 'autistic'. I think I would be more forgiving if his diagnosis had been Aspergers. But knowing what I know now he was obviously autistic from the age of 2+.

I think it would be helpful to have your family member with some knowledge come along with you, and for you to mention the family history and also have your own notes.

But the bottom line is that every child has to be placed in a suitable environment at either nursery or school. If you feel your child needs a SEN nursery placement then say so. However I am not sure if you need a diagnosis to access such a place.

Professionals either diagnose, or say they don't like to give a child a label. However, if your child is struggling and needs support in nursery or school then tell the paediatrician that and that your child needs a diagnosis to access the support and structure and placement that they need. I don't know if you need a diagnosis to access all the help and supports available pre-school age. Maybe other parents will post about that. But if you do need a diagnosis so access anything that you think is relevant then I would go back to the paediatrician.

Try not to worry too much before the appointment. Just make sure you are prepared and have thought through what your response will be if they say they want to 'wait and see'.

[A and A]

hi there just to say we applied for a statement of statutory edcational needs for Liam aged 2 years and 8 months who is showing ASD signs liam doesn't speak any words just makes sounds, the statement of educational needs came back as a no due to not enough evidence which we were expecting but the panel did notice that Liam requires further support and help so they have referred him to a educational psychologist who will contact us soon, with regards to specialised nursery placements a statement is not needed you just need a referral from the educational psychologist so be sure to get this arranged.

 

A and A

[concernedmummy]

Sally 44, I have to agree with what you say about what a child is like on the day, that is why I am taking my sis in law, she has noticed traits that I hadn't until she pointed them out to me so I am hoping that she can be of help with her observations.

My son has a few words now (thanks Mr Tumble) although he doesn't use the words to communicate anything, he just names things. I think there may be a echolalic problem also, the one and only sentence my son has ever said was 'the baby is me' I was really made up and thought he was at last starting to understand, until I watched on of the Something Special episodes and the whole sentence and even the signs he had obviously copied.

 

The paed my son is seeing is the same one that my step son was under, so I do know him, unfortunately he didn't diagnose my step sons Aspergers until he was about 9, he had been seeing him since he was 4 and had diagnosed ADHD age 4.

 

A and A, it is interesting to hear that you applied for a statement already, at the very least you are getting the ed psych involved.

Fortunately the same day I asked the GP to refer my son I asked the Health Visitor to come and see my son, she did a speech and language therapy referral as I had requested and I have managed to get a cancellation for next week.

So I have a busy week with my little one next week!

[smiley1590]

echolia is can be part of having an ASD can become a real prob at time! and is common in ASD for this to happne copying phrases over repeating certain words or sentences said i do this i have AS! i don't even realise at time it problem when i do it but afterwards i do! hard to control it! as connects with ASD part links with it alot time! hard seperate the two apart! i'm glad you asked GP to refer your son and health visitor glad she did an SLT referral glad a cancellation has come up for next week the sooner the better for you both! most AS kids are misdiagnosed as ADHD first then comes up they actually have AS instead! you do have a busy week! sounds like could be echolia you could be right! i'm pleased you taking your sister in law for practical advice and support! it may help you explain personal situation better come across and may bring more signs that you don't see because you live with him everyday day in and day out!

 

good luck at the assessment this week-be thinking of you!

take care

XKLX

[KezT]

The best advice I can offer, is just to be firm! Remind the paed of the family history, explain the traits you/your sister-in-law have seen, then actually ask for a full assessment. Ask who else will be involved. don't allow the Paed to say whether it is going to happen or not - just assume that it is, and ask questions about the provess. If they suggest he is too young, repeat again about family history, traits noticed and that you want an assessment. At the end of the day, you are the "customer" and they should do what you ask! Any paed who repeatedly refuses to do an assessment after you have firmly demanded one risks a lot if two years down the line you get a DX & decide to sue the orig paed LOL

[concernedmummy]

Hi just thought I would post an update.

It was a different paed than I was expecting, and she was lovely and has lots of experience with children with ASD's.

My ds went straight to the table with they toys and started playing!!! Not something he would usually do!! There was another lady there and she was trying to play with him, he did take a bit of notice in what she was doing but there was a fair amount of spinning objects on the toys (my ds just cannot resist!!).

Anyway, I was asked loads of questions and then some!! She wrote nearly everything down too.

She says that she believes that there are some strong indicators that ds is on the spectrum in some way but that she will need a fair bit more information before she can look to any type of dx, which I appreciate.

She has done a referral for portage to come to our house and see ds and is also going to write to the speech therapist for input(we saw the speech therapist on fri).

She is also a little concerned that ds is still tip toe walking, even with shoes on so she is doing a referral to physio to try and stop this.

All in all it seemed to go better than expected I think I had got myself a bit worked up before going!!

Thanks to all who posted with help and advice, much appreciated.

 

C

[smiley1590]

i used to walk on my tiptoes and it was looked into by OT's nothing was ever really found so don't whether autism or dyspraxic based i had speech and lang therapy too! take care XKX