First appointment with paediatrician re. asd

[redhappy]

This has happened so much sooner than expected! Appointment is 29th June and the hv sent referral about 3weeks ago. I thought I would have to wait 6 months for this appointment.

So just wondering if anyone can enlighten me what to expect at this appointment? Have asked about the process as a whole on here before, so apologies if you've already answered in the past, I just find it all a bit overwhelming at times and difficult to keep track of how it all works.

If anyone can suggest what I can do to prepare for this appointment I would be very grateful. Or what I should aim to achieve? I'm guessing I should want ds to show his worst so they don't just fob us off?

Hi

Depends how in depth it is - our first community paed took a brief history - e.g. any pregnancy/labour/post natal difficulties, when milestones were met (smiling/sitting/standing/walking etc).
At a different appt I was asked how DS went up and down the stairs e.g. if still needed carrying/crawled/one step 2 feet together another step/or as an adult (with no mobility difficulties) would (can't think how it is properly described!).

Worth cobbling together a list of your concerns and when you first noticed them/they became apparent. Is your son in nursery/preschool? If so worth asking them to do a brief report to take with you.

Hope the appt goes well

thanks

I have a folder from his previous nursery with observations in it. I gave this to the new playschool when we moved house and they are also using it so will take that with me.

Somebody gave me and excellent link on here a few months ago that I will have to try and find out about sensory perception stuff, and there were certain conditions that he totally fit so I'm planning to print out and highlight that to take with us.

I just don't want to be too expectant of this appointment as I know it's a long road ahead of us. But I also don't want to get complacent and not make the most of every opportunity. Just need to hold my nerve I think!

It really varies according to area I think. Where I live, we got referred to the general community paediatrician, who, if she felt it was appropriate, would have referred us into the Child Development Centre. If you've been referred to development centre/development paediatrician it may be more in depth IYSWIM.

If your DS is displaying some sensory processing difficulties try and get a referral to an OT at your paed. appt (waiting lists are usually long so get on the list as quickly as you can).

I think targets are for first appointment to be done within 6 weeks. For that reason, it usually is very broad and not much detail. If something is suspected you'll then be referred to a dx clinic, possibly a series of assessments before that too.

BUT, these things are different in different areas. If you don't mind sharing where you are you might get someone who knows.

I don't mind at all...I am in Malvern, Worcestershire.

OK, so we are really looking to persuade them for another referral? Shame I am so cynical so soon into the process!

Well, it will help if you have researched ASD's and present as convinced that he has one, at least list behaviours that are common to someone with one. It will mean you are definately referred, but it might also mean that you are referred quickly, because some of the nonsense spouted about why the process is so long is that parents need time to get used to the idea . This is how they justify it to themselves anyway.

Really?!
Well I am definitely used to the idea, and 100% convinced he had it. Actually I'm a bit daunted at the prospect of writing everything down for them because there is just sooooo much, partly down to my obssessive reading up on the subject.

I am quite clear about my aims too- he starts school september 2011 so I really want to push to get everything in place before then, so hopefully they will be helpful with that then.

The appointment is at a hospital, but it is a brand new one (it's not actually open yet!) so not entirely sure who is based there.

I was just about to post the same question we have our first appointment 30/06/10 and was wondering what to take.

I have got nursery to write a report as they currently offer 1 to 1 care and have witnessed lots of her behavioral traits and random violence towards others.
My darling DD 3years often turns into an angel during appointments as she is excited by the new surroundings so need evidence-I also have the lists I wrote to Gp/HV at 18months and 2.6 years detailing behaviour, sensory issues and lack of understanding at the time thought this might be useful to show how she has changed/stayed the same over the last year.

It is nerve racking as what they may not see in an hour appointment would be apparent in the multi disciplinary assesment over 4 days so I really need the referral.

Good luck for yours

We did have to wait 6 months :-(

It is worrying isn't it? And strange to want someone not to see the best in your child I saw elsewhere someone had suggested videoing your child for the same reasons.

ds does not like new people or places as a rule .

Actually this was the case when I took him to the health visitor to ask for referral (last month). He will be 4 in Sept and development review put him at 18-24 months, maybe that is something to be concerned about so they pushed us up the list? I have no idea what is considered 'bad' or average etc

Good luck with the appointment hotmama will you let us know how you got on?

We have just been through this. Luckily our appointment came up very quickly too.

To my surprise we were given a diagnosis on the day, and didn't need another referral.

We had to fill in several hundred questions before hand (his teachers had to provide a written report too), so a lot of info was already on file.

For the appointment DH and I were asked another gazillion questions (about everything - what DS liked, when he talked, sat up, what the birth was like etc). In the meantime, DS was in another room being assessed by a SALT and another paed. He was having a fab time (I could hear him laughing) and was having an all round good day, so I was surprised (relieved, gutted, total mixed bag) that they still gave him the ASD DX. They picked up lots of things in the assessment that we were aware of, but never got the significance...

I will look out for your update first you can tell me what happened at yours
I am taking my best friend as support DP working, as she has a child of same age and she has been there through my nightmare days(of which there has been many). She is also a lot more forthright than me as I can find the professionals somewhat intimidating.

I really hope she is having a bad day that day as it's difficult to convey this happy little madam upends dining room chairs, throws anything to hand and charges into the telly constantly.
Then there are the days her sister 11 isn't even able to set foot in the room without it sending her in complete meltdown.

She is also due to start school 2011 and at this stage I cannot see her being able to function in a 'normal' school enviroment without support thankfully the preschool put this in place initially just on my observations and it has be ongoing ever since. They also use picture cards to atticipate change. I have a feeling gaining that support for school will prove a little harder to get.

oh gosh I hadn't thought about support! dp goes away with work for the whole of July tarting 28th June, I was chuffed grandma agreed to babysit so I didn't have to bring his younger sister!

Yes I will let you know what happened, and lots of good ideas above too to help prepare for it.

Hi redhappy,

The community paediatrician we saw was not that interested in the specifics of any ASD symptoms. She was more bothered to make sure DD was physically healthy.

We had by that time already been referred to Peartrees (CAMHS) who did the developmental history and considered signs of ASD. They didn't involve the Comm Paed in the diagnostic process although may have done if we'd asked.

I don't know which bit of Worcs you are in so you may not be referred to Peartrees because they cover the north of the county.

Please CAT me if you'd like to exchange email addresses.

I would say tomorrow that you're best describing the issues which cause you and your family most problems rather than those you feel most point to ASD as they seem to take exception to parents diagnosing their own children.

I think it's a good idea to write a list of the points which concern you most. CAMHS didn't have to witness the autistic behaviour for themselves from DD1 - they heard most from my descriptions of our home life then just looked for evidence from school and the ed psych to back it up.

HTH

We were first referred by Nursery in december last year, saw a HV in Jan, Speech therapist in Feb, Development assesment in March...checking she can jump, walk etc, all referred us to combined clinic but as she is not 5 until Oct were unsure which to send us to...I have recently been assured we will be seen by the 5+ team in August....but the wait has been killing me! Research, diaries and observations have become my obsession!

On a more positive note we were also reffered to an Inclusion teacher for her starting school in sept, they visited her in nursery recently and are doing a home visit this week.

It can be a long process but I have my fingers crossed for a diagnosis on the day. I has been an emotional rollercoaster already but I feel well prepared. Daddy had a tough time getting his head round it, and Grandad! Luckily Grandma threw herself into research and has been my support.

Good luck! xxxxx

Thanks Al1son, have gooogled peartrees, doubt we will go there as we are in Malvern (plus they are building a brand new hospital here, so I guess that's where everything will happen.) It was really useful info though, hadn't occurred to me they wouldn't like parents diagnosing. Am now writing a new list tot ake with me with a slightly different emphasis

I can't do cat, but my email is [email protected].

Treebs that sounds like an agonising wait! I hope it's all sorted for you soon. Is grandma your mother? Funnily enough we decided not to tell the Grandparents for quite a while because I wanted to get my head around it and do my own research so I was prepared for when they grandmothers got stuck in!

Appointment is at 3pm tomorrow, just preparing myself for it to be a bit of an anticlimax really.

I found telling grandparents really quite hard. I made sure I resilient enough to cope with my parents not believing me and it's a good job I did.

I think getting you own head round it first would be a very good idea.

We have told them now. At the time I worked with my parents, sat at desk next to my mum all day so it was a bit tricky at times!

Their responses were exactly as expected though, so much as we love them I was glad I'd waited!

MIL immediate answer to being told we thought ds had aspergers/autism " Oh I've got that!" and proceeded to talk about herself!

My mother went very quiet and just said "oh, that explains a looooot" (she'd looked after him the day before)

Funnily enough once my mother stopped telling me I was wrong she decided she'd got it and still goes on about it 3 months later. Maybe they're right!