appointment re ASD: what should I be finding out /asking?

[joymaker]

Hi all, this is my fist post on this forum

I'm feeling really out of my depth, we have an appointment on Tuesday morning to see if ds age 3 is on the spectrum or not and I'm feeling very confused about it all. I really want to be focused before hand but seem to be thinking in circles.

The appointment is with a community paed. What should I be finding out /asking? Will they be able to make an initial diagnosis? what if he's borderline? Will they do tests or just take his developmental history? If so what will they be like and should I be prepare ds?

Sorry for all the quetions

Please advise me how to make the most of the appointment (so I am able to trust the medical opinion offered)

Thanks so much in advance

My DS was a bit older, he was aged six, so I expect it?ll be a bit different for your DS, but when we first saw the ped she took a long history from me while my DS and DH sat outside. Then we had a separate appointment where she did lots of tests on DS while I sat with them. They did games and puzzles and she asked him what people were doing in pictures, and she also chatted to him. Sitting and listening I could see some things about DS I?d never noticed before ?she asked him several different times ?can you tell me what time it is?? and DS carefully said ?yes?(!!!) and later she asked ?what time is it? and only then he looked at the clock and said ?five to one? She didn?t give us a diagnosis at the time, but referred us on to a speech therapist and clinical psychologist, and it was the clinical psych who told us the diagnosis which was pretty much what we were expecting by then anyway. But I think that varies a lot.

It was a very nerve-racking time for us, I hope it goes well for you and your DS

Hi Joy, for us the community paed took a detailed history of ds (age 4) and did some tests - eg. puzzles, drawing. A month later we met with the Autism Team and got a diagnosis from them after he had been observed at school.

My ds loved going to the clinic and enjoyed all assessments. I told him he was going to see a doctor to check he was developing ok before starting school. He seemed to accept this and didnt ask anything.

I worried alot about the appointments and am very glad to have the assessment period over with. I would recommend keeping a diary of your ds's behaviour so the important things are fresh in your mind before the appointment and videos can also be useful.

Good luck, I hope it goes well.

I think it is different from area to area. This will be the first of several meetings. I would take a big list of concerns with you, maybe video evidence if you have any. Also make a list of milestones if you can remember them. You will be asked about those and your medical and family history of related conditions. Also about the birth.

You are likely to be referred on to several other departments.

My son is older (9) and we are nearing the end. He was observed in school as well as other referrals.

DS sat in all of the first appt. he won't come to this last one.

Hi joy. I dont have much to add to the advice above, but would agree on some of the main points, which to me are

• take your detailed notes of your observations of your DS to date. Especially if you've got any videos of melt-downs etc

• have a list of questions

• a second adult to hand to take your DS so you can talk to the paed once the assessment is done

• expect to be floored by any diagnosis, even if you anticipate it. I know that I fell apart a few days later.

Good luck.

Joy, my son was 3ish when first assessed and I agree with everyone here, the best thing you can do is have a list of questions, talk openly about how your child is at home and your concerns. I also agree, any diagnosis given is really hard to hear but in some ways is a relief as it means that you weren't just making a fuss for no reason and that you can now start to ensure they get all the help they need - and you!

Good luck and let us know how it goes.

Thank you all so much for your advice and support I suddenly don't feel so alone .

Dp will be coming with us and we have a note of our concerns. I don't want to let our DS down and feel I have to get this 'right'. I just hope we'll be able to assess the assessment, it's such an emotional time. (He will also be starting nursery for the first time next week).

Thank you for your good wishes I'll let you know how it goes.

Hello Joy, I see you have lots of answers. Just wanted to add my experience as it was just last wednesday. We had a long appointment, over 1 hour. My daughter was with me and dr all the time. Dr asked questions about her development as an infant, and when I may have noticed changes. She measured her, weighed her, asked questions about diet, sleeping, playing, social interaction (or lack thereof) etc. I forgot to bring written notes, but as I had spent a long time thinking carefully about everything and remembering things, that was fine.
For us, the dr was able to say that she would expect an ASD diagnosis to be the outcome, but would wait with formal diagnosis until further routine tests were done and give time for more SALT sessions.
You wont let your son down, and if there's the two of you one will remember what the other one forgets :)
I've also gone bananas on reading up on autism, which has helped. Even if you don't have time before the appt, I found it very helpful to read lots of different books. Newer ones are better, as research has shown some old attitudes to be wrong.

Thanks for taking the time to share your experience turbo. Can you recommend a book that might be useful/ helped you? -There are quite a few to choose from.

I found Autism Spectrum Disorders by Chantal Sicile-Kira very good, then I read books specifically for girls as it is less usual, and now I'm reading a Temple Grandin book.
Basically went on Amazon and had a look for books that appealed to me. I read one by Lorna King (?) which was a bit old so passed it on to a charity shop.
Dr Baron-Cohen have also written many highly acclaimed books, more appropriate for boys I gather.
Also just read one from a Steiner antrosohpy point of view, some very interesting bits about genetics and the link to the gut and digestion, but I'm not terribly spiritual, so stopped where that bit got too intense.
All of the books had something to offer though, and I feel much more optimisitc now I have more knowledge.

I also read the Chantal Sicile-Kira books and they're very insightful.

I had our initial assessment for DD by the paed a month ago & we have our assessment by CAMHS in a couple of weeks time for Aspergers, as that is what the paed thinks it is. She referred us a priority case which I am so grateful for. I am also nervous, but DD has been so so hard these last few weeks I'm desperate for someone to tell me what is going on & how I can parent it better :(

As a side note, I have been told that "Aspergers" no longer exists as a diagnosis. Everyone we have seen so far have said they think DD has high functioning aspergers, if that no longer a diagnosis option what will I be told?? I would appreciate any advice from the more experienced mothers on here. Thanks

My 4 year old was diagnosed as ASD, possibly Aspergers but that he was still very young and yes, the Developmental Paediatrician did say they are steering away from using the term 'Aspergers' and keeping the more generic ASD term. I assume this is because if given the label of Aspergers, many assume this means them to be more capable than they may be and can lessen the support they receive. I also assume it is because it is very young to be sure how his brain may develop.

Sorry for not posting earlier, I thought I had too caught up with DS starting nursery probably.

Anyway the paed said she observed nothing that would suggest ASD and said a period of 'watchful waiting' would be a good idea, we are to go back for a review appointment in 6 months time. I asked for DS to see a SALT as he sometimes used phrase speech (which has reduced rapidly i.e to almost none after starting nursery unless he is upset) which I wanted double checked. We had this appointment last week and again because he has good language and comprehension for his age nothing was seen as out of the ordinary.

He settled well at nursery however last week has became really scared of a particular sound in a song (wooooo =the wind) He is okay when he sings it. He, DP and I sing it at home but when he is in the small story room with the rest of his class he is scared, moreso as the week progressed. The play workers would let him stand just outside the door as he would still want to join in the song but now he's saying he doesn't like nursery and doesn't want to go in . He got very upset at nursery yesterday because of this and now something about another song.

My DP had a word and DS playworkers have been very accomodating saying they won't do the song this week but today we were told they think they think they need to get a SNN in? We don't know what to think