pediatrician appointment :1st contact for son with possible aspergers, what happens?

[sarah876]

On Wednesday...I will be taking my son to the hospital for first appointment...what will normally happen? It has taken a year to get this appointment as he was initially involved with CAHMS ( what a fat use they are).How long does it usually take to get a confirmed diagnosis....and then what from there? My son is 12 years old.

If only we knew...

So much depends on which area, which team, etc. If it's really straightforward and he ticks all the boxes, then it might be there and then. If there are doubts, or he's in a sulk that day and they can't get a lot of info out of him, it might need one or more follow-ups.

As for what happens in the session, questions aplenty about each and every aspect of his life to date, right from birth onwards. Social things, body language and eye contact things, obsession things, interests, hobbies, friendships - anything and everything to give them a clue about the bigger picture.

Only took one session for me as an adult, but that was after a lot of preparatory work, questioning of relatives etc.

Thankyou for your reply

hi sarah, think you must be kinda travelling along the same road i am and it is a long road and lonely road. my dd is 10 and is going thr this process at the moment and i have lurked here since christmas, although i am posting now and gettings lots of good advice and made to feel very welcome, and , it is so hard to believe how many families are in this position and there is absolutely no help of support . can i ask what problems your son has, my dd is having a bad time at school and social side of things.
hope to talk to you again

bev

Hi,
My son has always been hard work but I thought"hey" my first child this must be what it is like to be a parent. Had alot of ups and downs but I never really thought that maybe he might have something....i one of those people that unless its extreme i dont think these a problem.Started getting real problems when he was eight....things like not wanting to go to school , wanting to die, not having friends but i thought this was a phase and made him go ...things did settle but looking back, his way of coping was to become the clown act.I spilt up with my husband and thats when he started really misbehaving and not seeming to care. thought it was down to the breakup and in some ways it was....then my husband was killed....so you can see that initially we all thought it was down to truama.....after 4 years of asking for help he finally gets refered to CAHMS.....Im at this point pulling my hair out as his behaviour had hit rock bottom and he had no idea what all the fuss was about. CAHMS were useless....he starts secondary school and he is getting into fights and has had 4 exclusions since he started in sep 08. I meet his special needs teacher as he on school action plus and discuss possible ADHD, shes shacks her no and when i ask do you think its aspergers i was quite shocked that the answer was yes.He isnt doing well at school...it just seems that he isnt interested and feels it is waste of time. His I.Q. is good but he is in the lower sect because he doesnt try.All i say is make sure you attend all the appointments that are made because if they can point the finger of blame on you for lack of trying they will.thats what CAHMS did to me.What problems have you had?

Me too - waiting after we had to go back to the beginning of the process when first paediatrician didn't refer us on properly. Like beverleyjane 10 year old DD. It's very frustrating. One thing school suggested I could do in meantime is write down every bit of evidence that might support a diagnosis, from DD being a baby to present. I've done about 5 typed pages so far and still going strong!! I think that's useful as there might be things you want to discuss or have noted, but forget when you actually meet up and get caught up in the questions.

One thing that happened this year beverleyjane is that the SENCO directed DDs attentions to another girl who, though isn't diagnosed with anything has a different approach to how she socialises, and they do play from time to time, even though DD finds it difficult to co-operate when they are playing. They seem to get on, although do fall out - but nothing like DD with other girls where she always ends up bullied. Maybe SENCO could help? A recent example was where she was a library monitor with her "friends" and the other girls went on the librarian's computer which isn't allowed. DD got a teacher and they were all told off, then DD didn't understand why they were all angry with her and shouted at her because she had followed the rules and done her job. Trying to explain how to handle this to her is very difficult! She was doing the right thing, but socially (for Year 6 children) the wrong thing. Is your DD in Year 5 or 6?

Good luck to both of you .

I was referred to CAHMS a year ago and never heard from them! That was for "support" after an intial diagnosis that ended up being invalid as the paediatrician I saw should have sent DD for further diagnosis from a specialist team. I have since got a direct GP referral to the "Aspergers and Autism assessment team" - school had found out that these would be who our CAHMS would pass DD on to. I have since been contacted to tell me it will take at least 8 months, so DD will have to make transition to secondary school without a diagnosis in place. I am as I've been chasing this for over 2 years now, plus the several years before of meetings to discuss DDs social issues and being bullied, of her unhappiness at school, and a lot of the other things you have described. I feel for you with your 12 year old as without a diagnosis in place secondary teachers can misinterpret behaviour or not differentiate for your son properly in lessons. I am a secondary teacher - we can't have the same relationship with students that primary teachers do as we only see them for a fraction of the time so we rely on accurate information from the pastoral system to help us to cater for all needs. Not all teachers can recognise different conditions in students and need help to identify them - like training, but mainly support from head of year and SENCO. I really hope your meeting goes well, it sounds like your SENCO has at least helped to point you in the right direction with aspergers. I always suspected there was more to DDs social issues, and it was during a chat with the SENCO at my school, where he hadn't even met DD, that he said immediately it sounded like she was on the autistic spectrum and needed to be referred for diagnosis.

If I'd relied on her schools to point out there could be an underlying reason, I'd still be waiting. Though in fairness, her current school referred her to a speech therapist 3 years ago as they'd believed there was more to it, but I'm still waiting for them to see her too. I bypassed them and went to GP. The process is ridiculously slow. Our children are being failed by the system.

As you say, if it's your first child, you just believe it's the way that they are. Plus, I had taught boys with the condition, but never girls and there are differences between the two.

LONG POSTS . Rant over. Sorry!!!

I totally agree with you the system has failed our children.....the SENCO lady at my school has been brilliant and has now decided to be the lead proffesional in my sons case......as CAHMS kinda of wouldnt commit themselves until my son had seen the pediatrician......we have fallen in so many "grey areas" its bordering ridiculous and the level of communication is poor. My special needs lady is taking over so appointments get made and everyone is informed as she is as much frustrated as me.

It's good that you're finally getting some support but awful that it has to get to such a confusing state before anyone jumps in to help. I really hope things get moving for you now, let us know how you get on.

hi stripytroubletrousers, thanks for replying. can i ask how your dd is about going to school etc. my dd is now school phobic and we have a major meltdown every morning now, but we do eventually get her there. dd has also stopped going to any of the activities that she used to do and going shopping is just a nightmare, you can see her physically tensing when there is any noise or if anyone goes to walk near her - pretty much all the time then!! we are attending CAMHS but they arent really doing anything so that is why my hopes are all on friday when i am doing the DISCO. hopefully the picture will be a bit clearer after that. can i also ask what SENCO is and does everyschool have one. our school has been very good and dd does half days but i think she needs help when learning new things, she is in primary 6 and clever but when they learn something new, she will come home in a real state, lots of tears and then i will have to go over and over it until she is happier with, but then it will all start again in the morning - she has no confidence at all in herself

does any of this sound familiar to you

thanks

bev

SENCO is the special educational needs co-ordinator for the school - an allocated person whose job it is to make sure that the children have reasonable access to education. At the moment, they can be untrained non-teachers, but that will change soon. There has to be one for each state school, yes.

Bev, have a look for the 'life of Amber' threads on here (the advanced search thingy should take you to them). There's bit there that explain a lot about the sensory overload in shops, for example? Might help?

beverleyjane DD has never found school as physically difficult to go to as your DD - with sensory overload - it sounds like your DD is far more acute. I'm sorry, I'm new to the topic so I don't really know any of your previous posts. My DD finds it really difficult to concentrate if there is noise or strong visual images around her. She sort of switches off, forgets everything and can't follow even very simple instructions. I'm lucky in the respect that her new school (we moved 3 years ago) has been brilliant and have withdrawn her when they felt it was needed and have been using social stories with her to help her to cope. My main issue with DD has always been the social problems that she encounters.

As Amber says, SENCOs are special educational needs co-ordinators. All of the ones I've worked with have been teachers, but I've no doubt that some in other schools might be learning mentors or support assistants who have worked up to the role. I've only posted one thread on here before and Amber's help was really enlightening - it's great to get an insider perspective on what is going on with my DD.

I would say that if you haven't met the SENCO at her school yet I'd be very surprised, but if that is the case then you really should meet and have a talk. I'm dreading the move to secondary school, and I'm nervous about her becoming a teenager too. You really aren't alone! I hope that with the diagnosis and better support you find that your DD starts to rebuild some of her lost confidence. I'm interested to know what her school are doing to make your DDs time at school more comfortable apart from the half days? For example, if she is in mainstream and finds the classroom really difficult could she have a quiet place to go and work? Could they take away wall displays if they interfere with her learning? She might not have been diagnosed yet, but that shouldn't stop school from trying out things to try and help with the issues your DD faces.