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Finally got paediatrician appointment for ASC assessment - suddenly seems real!(9 Posts)
After a year of wondering if we should go down the assessment route, educational psychologist appointments and waiting to get on the ASC Pathway we finally have an appointment with a paediatrician ( although not until August). Now we have to deal with the reality of it. Not sure what will happen at the appointment - will they want to ask us for background information before hand? Our DD1 doesn't know yet that we are looking to assess her for anything, so don't want to go through her problems in front of her. I hope someone might be able to advise how to discuss the upcoming process with her please? She will be 10 by the time we have to appointment and is very bright so will know she is being assessed. How do I explain that it is actually something that will help her?
It is very tricky when children are old enough to understand, Dd3 was assessed many times between age 5.5 and 9 and the older she got the more she despised going to appointments!
We always told her that they were clinic appoinments and that lots of children had to go to these type of appointments!
I dont know if that was right or wrong but I didnt dare tell her she might have Asd in case they decided not to dx her!
One appointment that stuck in our minds was with a paed when Dd3 lay across the chairs in the fortunately empty waiting room screaming "I dont need to see a Dr there is nothing wrong with me!!" Over and over again! It was the first time she had dropped her mask in front of a paed and it helped us imeasurably!!
I am sorry I have no helpful advice for you but at least on here you are never alone!
Take care and good luck
Our paed basically sat down and said go - then wrote as fast as she could! She did ask questions when she needed clarification and was quite holistic in a way (like taking a couple of minutes of the appointment to explain how to help DD2 if she ever had an asthma attack again as with her SPD and the anxiety she would never be able to get a mask over her face and how to help while she couldn't breath).
She did try to bring DD2 in when she could but DD2 did not want to participate and spent the first 40 minutes sitting like butter wouldn't melt drawing (has never happened before or since ). The only thing she could get out of her after a rather protracted series of ignored questions was the word 'le-llo' (what colour are daffodils?). After 40 minutes DD2 then decided enough was enough and decided to try to eat the toys and jump on DH and me like we were a special parkour course.
However DD is only 5. What is your gut instinct? You know her better than anyone else so could perhaps decide how much she needs to know. I started with DD2 and her older sister by watching some excellent cartoons on the national autism society (?) website done by a boy with asbergers. It was interesting for them and we talked about it quite a lot - although I did bottle it a bit and looked at lots of different SEN so it was part of a whole range, I guess I hoped it would stick and it's always good to remind everyone about inclusion. (Interestingly DD1(7) said afterwards "mum I think DD2 has that autism one do you?").
We were really uncomfortable about talking about DD2 in front of her and thought for a while afterwards that her behaviour was terrible because of it (total school refusal) but then found out some bays had been mean to her at school and wasn't that at all. Having read through lots of threads it seems like these things mostly happen in front of DCs so I don't know what to suggest (don't know if anyone has - or even if you are allowed to - take in headphones and something they are allowed to listen to?). Good luck I really hope it goes well x
Also patience waiting room story made me smile, DD2 had a long wait in the waiting room and discovered a new noise which clearly got a reaction - snorting like a pig when she was just out of reach then laughing and doing it again and again it was just a normal doctors surgery because it was community paed, I had to go the the toilet after a bit because I was so embarrassed (and also trying not to laugh!).
"Boys" (we don't send her to tree school where the herb trees gang up on her )
My dd was 9 when we started in the system, 11 when she got her asd dx. We never used the word autism in case they didn't dx that. Dd has sever anxiety/worries/stress so we told her we were seeing doctors that would ask lots of questions and try to see if they could find out why her brain makes her worry so much .. then they may be able to help her not to worry. All discussions took place in front of dd, I don't like this as it's all quite negative, but it seems common practise. They did use the word autism at some point. When we got home I explained to dd what autism was (in very simple terms) but she didn't really seem to care or be bothered. When she finally was dx it seemed to take a weight off her shoulders.
We have our first appointment with community paed on the 22nd for ds2. I've tackled it with him in a similar way, NOT mentioned asd at all as he doesn't seem to like the thought of him having asd! He doesn't like it when I compare him to his sister (similar anxieties etc). We've been put down a different route with ds than we were with dd so it seems all new to us this time round. I think dd referral was a mess from beginning to end, I'm hoping it's better with ds.
Good luck at your appointment mrs.
Thanks so much for all your replies. Apart from your advice it's just good to feel we're not alone. I am planning to call the paediatrician's office to try to discuss how to handle things. I definitely think we need to pass on background information before the appointment. The main challenge is that DD doesn't think she needs any help - thinking she doesn't need the TA sessions at school etc. I think my plan is to pick it as helping for when she goes to high school - just over a year to go! First stop calling the paediatrician!
We wrote down DS1's main difficulties and gave the pieces of paper to the paediatrician. We were also asked to fill in a long questionnaire at home. This did not completely eliminate the need to discuss DS1 in front of him, but it helped.
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