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Going to dr tomorrow for referral for Aspergers for my son

(31 Posts)
buildingmycorestrength Thu 07-Feb-13 21:51:30

Hi all. After years of wondering about my now 8 yr old son, lots of anxiety about him (for multiple and not always rational reasons), reading books, enquiring about referrals, having low-level assessments by the school and being told by everyone that he may be a bit 'borderline' but there is nothing to worry about (inc friends with children with HFA), it is finally time to deal with this properly.

I am going to the (fantastic) doc tomorrow armed with my lists and notes from the brilliant chat I had with his teacher at today's parents' evening, and I'm going to present my case, and I will get a referral.

I may wait months for a diagnosis, but I will then know one way or another.

I could give you all a long list with symptoms, or whatever I should call it, quirks? Personality attributes? confused Anyway, not necessary just here. He is definitely not a very serious case but it is causing some problems at school and it won't get easier as he gets into adolescence.

I am so calm about this, it is a bit weird. I'm just totally certain it is time to sort this out.

Suffice to say, he isn't 'growing out of it'. Thanks for being there, all you kind people.

buildingmycorestrength Thu 18-Apr-13 20:00:45

Yes, I had written up a load of stuff and sent school observations as well! All helpful. Don't think we have a separate autism assessment clinic here, not sure.

MissDuke Thu 18-Apr-13 19:28:49

Awww I was the same after our initial appt, I actually went to bed at 7pm and just lay in the dark crying! It really hit me then what was happening, and it is exhausting!

Ours was slightly different in that the school and I filled out lots of questionnaires before hand, and I brought an 8 page diary of the previous week with me, I also copied every single school report she ever had and sent it to paed. So she was able to refer dd to autism assessment clinic at that first appt, we are now waiting for that.

It's great you got those referrals made, we are having a lot of trouble getting them!

buildingmycorestrength Thu 18-Apr-13 17:48:36

Good result, I think.

He looked at all my notes I had sent, and after quite a short chat, I thought, said he would refer for Physio and OT, as well as ensuresis clinic, and gave me a couple of questionnaires to complete. He also will get some more information from the school, and then will meet with me and my husband. He hardly looked at my son but he said he wouldn't get a clear picture from a short interaction anyway.

He said he doesn't have enough information for a formal diagnosis yet, but is thinking Aspergers and should have enough info by the next time we meet.

I am pleased but a bit shaky now.

buildingmycorestrength Tue 16-Apr-13 21:42:34

Okay, pediatrician will see him on Thursday. I am surprisingly nervous. It is just...important...isn't it.

A few things I know I want to ask...apart from 'What's up with him, then?'

1) does he need Physio for his years of tiptoe walking? He has been complaining of sore legs and I'm not sure if the stretches I get him to do are the right ones.

2) Do we just speak to the GP about a bedwetting alarm?

3) He has flapping, chewing, rubbing, and various other sensory behaviours...he should probably see an OT for that..does that come from GP? And how to deal with in the meantime? We have given him a chew toy but not sure if this is good.

4) He sometimes goes into a sort of 'limbo' state when he isn't being told what to do, or if he has forgotten the instructions from one minute previously how to to deal with this?

5) How should we deal with school anxiety for now?

6) Will he now be assessed by others? at school by an EP? What happens about the statement process? How do we even determine whether it is necessary?

Anything else that I should ask?

Thanks so much everyone.

babyinarms Fri 05-Apr-13 00:45:40

Good luck with your appointment! I unfortunately have no advice to addsad . My ds' s salt has suggested we apply to have him assessed for aspergers also. He is 8 and attending speech and language for approx 1 1/2 years for language delay. however our new speech and language therapist feels its more of a communication disorder he has. He does get anxious when trying to express himself. He is very literal. Doesnt get humour. Loves his friends being around but can only play outdoor games. no pretend or imaginary games are allowed and he will just leave the group or storm off if they begin that type of play. he has no repetitive behaviors. he has limited intersts alright and will always resort back to these if he is stuck for something to talk about. he is not an affectionate child as in does not like to hugged but likes to sit next to me just not cuddling etc. Just not sure what to do for the best. Maybe an assessment would answer a lot of our questions too !

buildingmycorestrength Thu 04-Apr-13 19:23:16

Might also take video of flapping and other behavs as suggested on another thread.

buildingmycorestrength Thu 04-Apr-13 19:18:35

Had a chat with a couple of friends about what to expect, very useful. It will be a pediatrician who sees us.

Have also printed off this list to go through with them.

http://spdsupport.org/resources/child-spd-symptoms.shtml

as he ticks a fair few boxes.

Think I will tell him it is just a checkup for his sore tummy he had before the performance.

Do you know if they will likely get him to do tasks? Or it more of a general chat?

Remember your written list of concerns and written list of questions, including 'what happens next?'

Dinkysmummy Thu 04-Apr-13 14:26:09

Wow..

Hope it goes well flowers

buildingmycorestrength Thu 04-Apr-13 14:22:44

Referral came through today...for Tues 16 April. Very soon...thought I was in for a long wait.

buildingmycorestrength Tue 02-Apr-13 07:02:31

Thanks guys. Will hang in there.

PolterGooseLaidAChocolateEgg Mon 01-Apr-13 17:58:21

Agree with dm and will also add that my ds can 'pass for normal' for short periods, 10 minutes is nothing, ignore the GP and good luck with assessment flowers

Dinkysmummy Mon 01-Apr-13 17:42:25

I doubt they would 'undo' the referral, even if they could. The doc (however nice he may be) is not a developmental paed so can't tell you that your son does or doesn't have a problem with any certainty, that's why they have to refer to a specialist. Even if the doc wrote a letter to paed to say he saw him as wasnt overly concerned, the paed will still talk to school and do their own assessments.

Don't panic.

I hope all goes as smoothly with the paed as it has with the school and getting the referral.

buildingmycorestrength Mon 01-Apr-13 17:15:05

Hello again...my son was off school for four days with tummy ache, looking wan and unwell. Dr was good and we eventually decided it was probably stress because of a school performance which he was anxious about. He hates anything like that.

The doc asked me whether we have heard anything since referral 6 weeks ago, and I said no. He then said, 'I'm ,much less worried about him now that I've seen him, as opposed to when I read everything in your letter.'

I was a bit shocked. Everything in the letter is still true. He's just been off school with physical manifestations of anxiety. Doc saw him for approx 10 min, during which time he was obv on best behaviour.

Doc will see him again after hols. He can't undo the referral can he? I want him seen by someone who knows what they are talking about!

MissDuke Tue 12-Feb-13 21:57:34

I hope you don't have to wait too long, good luck xx

buildingmycorestrength Tue 12-Feb-13 12:44:02

Just cheekily asked a parent whose son has been here three times if my son could come over after half term. Sky did not fall in. grin

troutsprout Tue 12-Feb-13 12:03:23

Sorry about the lack of party invite. This was one of the things I found very hard when ds was at primary school.
Glad you got a referral with no messing about.
Good luck ... My boy is now rather a big boy now(15) but he started the process at a similar age to your boy. I hope it goes well for you both.

buildingmycorestrength Tue 12-Feb-13 12:00:23

Thanks, rabbit. That helps, to think parents are probably usually just lazy.

And yes, that is why we have decided to pursue this now...there was a faint hope he might grow out of some things. He hasn't.

rabbitstew Tue 12-Feb-13 11:48:12

That's a real shame about the "best friend." sad Mind you, I used to think it was always the children who didn't want to invite my ds1 back, until a couple of children in his class started asking him to ask me to invite them over - their parents just didn't do playdates, they merely accepted them!!!! The children concerned had no problems with the idea of playing with ds1. I concluded that invites to playdates are not a good indication of likeability - it's the strange excuses for a child not being able to come over to play at yours when invited that send the strongest message!
ps I think 8 is quite a good age to assess for mild aspergers - children who had other reasons for their behaviours and difficulties have normally started to grow out of them a bit, whereas those with ongoing problems become much more obvious.

buildingmycorestrength Tue 12-Feb-13 11:22:00

Have just discovered that the boy my son considers her s best friend is having a birthday party today that my son wasn't invited to.

He never gets invited on play dates and has been invited to one birthday party this school year, that he couldn't go to due tho a holiday.

I always, always have to reinvite children who have been here before. He says, 'When can I go to X's house?' and so many of those don't happen.

buildingmycorestrength Fri 08-Feb-13 12:48:12

Yes, I agree that some people don't get it. You just have to accept that, I think. When my friend (who is honestly brilliant) says things like. 'Yes, all children have their special needs' I just smile and try not remember that she is trying to be helpful, that I have said exactly the same thing to people in the past, and that there is no way she can know how untrue that is. Every child is special and unique, but it is not the same.

I was sort of waiting for someone to give me permission to push this through, and then realised of course no one is going to do that. I can't wait for a consensus opinion among my friends and family. No one knows him as well as I do. No one wants there to be a problem. No one else has to live with it (except my husband, who is finally on board, and his sister who is little).

Anyway, who knows what they will come back with. Although, typing up my long, long list of behaviours just now was quite an effort so they'd better bloody say something!

mrsbaffled Fri 08-Feb-13 11:47:51

Glad you got your referral. Hope it comes through sooner rather than later. You will be up and down while you wait. I am 2/3 through the wait now, and most of the time feel OK, but am on a downer today after a talk with my best friend yesterday. She can't see what the problem is and has got me doubting myself again (it comes and goes). I keep thinking it's all in my head and DS is fine. However, rationally I know it's not true as it's family that made me push for referral in the first place and school have totally backed me up, stating they would be willing to push for referral if it wasn't forthcoming - so they can obvioulsy see something too.

buildingmycorestrength Fri 08-Feb-13 11:24:16

Hi all. Having said I was calm, I did take a long time to get to sleep last night and was quite wobbly going in to the appointment.

But within about 5 minutes of my starting to pull out all my documentation, he said, 'I will refer you - just type up everything you have there, and I'll send a letter off with all your supporting evidence. It will take a long time as the service is overwhelmed, but let's get started.'

I was so relieved. And sad. But it would have been much worse if I've have had to really fight, I think.

If only all doctors (and schools) were as sensible and easy to deal with as mine.

Just about to type it all up so can provide a list of 'quirks' if that helps anyone. But the anxieties I referred to above were actually all mine - I have been terribly anxious about him for many reasons some of which were much more to do with my psychological history than reality. I'm much better now, so much more able to see what is likely/real/probable.

EllenJaneisstillnotmyname Thu 07-Feb-13 22:37:38

Did wonder what doing your but meant! grin

buildingmycorestrength Thu 07-Feb-13 22:29:38

My NUT I meant! See? smile

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