What should I tell my daughter

[davers79]

Hi all

 

We are waiting for our 1st appointment with the peadiatrician to start the assessment process for possible Aspergers / Pragmatic Semantic Disorder and maybe Non Verbal Language Disorder. My daughter seems to have tendancies for all of these.

 

She is 10yrs old and I've no idea what to tell her when we go for the appt? She already has low self esteem and thinks shes no good at things so I don't want her to think shes seeing a doctor because something is "wrong" with her?

 

How have others explained this to their children of a similar age?

 

Also what kind of thing should we expect at the 1st appointment?

 

Thanks for your help :-)

 

Claire

[justine1]

Hi

I think it is hard to know exactly what to say because it depends on how aware she is of her differences.If she is very aware that she is different and has asked you about why she is different then you can remind her of that and say that is why you going to the appt.If she isnt aware of how she is different then prehaps explain she is going for a health check,most of the questions the paed asks are directed at the parent/s and the questions they do ask the child are just general questions "what do you like doing at school" etc so it isnt anything for her to worry about.I wouldnt say "we going to find out if you have ASD" because it will then mean having to explain what it is and as she hasnt got the dx this maybe awkward for you.

 

My son is six,he knew he is different before his dx,I never told him and in fact always treat/ed him the same as his brothers and never talked about things in front of him,but he did know.After I get the referral from the GP I told him we are going to see a "special kind of doctor" he immediatley said "is she going to find out whats going on in my head" so he was very aware and in fact he was so relieved when we went,even though we had to go twice and it took three mths to get his diagnosis.I think he knew by going he was going to get help.

 

I hope she will understand whatever you decide to tell her.

[Sammysnake]

Hi Claire

 

Like Justine's story, my daughter (9) had realised that something was up and was asking a lot of questions about why was she here and what was the purpose of her life. I think she felt uncomfortable and unsafe, like there was something going on that she was missing or doing wrong but couldn't name it. She's been getting some support this year from her teacher and we have begun to have school review meetings which she was aware of and very happy to know that we were all looking for ways to help her with the things she finds difficult. I suspected AS but didn't say anything in case I was wrong.

 

A couple of days before the appointment with the paediatrician Beth suddenly asked me if her brain was special. She wanted me to tell her that it is. I'd been looking for an opportunity to tell her about the appointment so I explained that whilst everyone is special some people's brains work in particularly different ways. I said that the Paediatrician is an expert in child development and understands how many different children's brains work and he wanted to meet her to see if there were any other things I and her teachers could be doing to support her better. I also explained that each individual has things that they are very good at and things that they find more difficult. Sometimes a particular collection of strengths and weaknesses can have a special name and the doctor was going to decide if that was the case with her. If it was, it would mean we could use strategies that had helped other people with that same profile and name to help her. It might help her to understand why she gets upset by certain things and help us to make it better for her. She then asked me outright what name I thought she might get for her brain so I did mention AS.

 

When we got the diagnosis the doctor explained directly to Beth what it is and what it means. She has been really happy ever since as she feels more relaxed, like she makes more sense to herself now and she knows that she is not alone in the way she feels. She knows that lots of people are looking out for her too and care about her - me, Dr Hunter and her teachers. We read together a book from school called 'Can I tell you about Asperger Syndrome?' which explains the syndrome very simply from a child/young person's point of view. It was invaluable.

 

Have you filled in any questionnaires to send to the doctor ahead of the appointment? Our school completed a very full social and emotional checklist which was fab and I wrote to him explaining some of the issues Beth has at home and telling him all the strategies I had been employing in the five years since I had last seen him and he'd said there was nothing wrong (! He apologised profusely for missing the diagnosis last time which I thought was very humble of him). This time around I thought I would bombard him with information before he even met Beth and it certainly helped.

 

Good luck with the appointment, Sam.

[Tabby-cat]

Hi, we are going for the first paediatrican appointment for our daughter this Thursday. She is 9 and has lots of worries and fears, so we have told her that we want to help her with her worries and we are going to see a doctor who sees lots of children who have worries, to see if there is anything we can do to help make the worries less. She was fine with that explanation, and as things progress we will elaborate.

 

I think you will know what to say to your child when the time comes. We (well, me mostly!) worried for several weeks about what to tell DD, but when the time came the right words just seemed to flow out of our mouths. I hope anyway

 

I don't know if you have been to the appointment yet, but I wish you the best of luck for it!

 

x