Aspergers diagnosis for older child? did it help your child?

[flowwithit]

I am thinking of going to ask for diagnosis after long time of various social behavioural and eating difficulties, teachers and Ed Psyc.also implying Ds has mild Asperger. When i have looked into this in the past he does tick many of the traits boxes. He went at age 8yrs to be assessed he wes seen for about 15 mins!but we were just told he is bright but difficult child and given booklet on parenting!
I have read threads on here about Aspergers and the seem familiar. The difficulties are getting worse now as he is at secondary school which is much bigger than his primary and he is finding it very difficult and is very anxious and worried all the time re eating, germs, toilets, how busy it is and lots of older lads. It breaks my heart and i lose sleep worrying about him and how to help
I do my very best but I think i really need advice on how to best to help him and have access to SENCO which you need a diagnosis for. Work wise he is fine and above average in all except english. Speech and language fine though,he mainly just finds that english comprehensions are almost impossible so score low there. I'm not sure how it would effect him to know if he has mild Aspergers? I feel he might be very dissapointed and think negatively. Already with Anxiety and low self esteem i worry this might make him feel worse. How does it effect their future jobs ect? Do you have to declare it on all forms? Is the access to senco helpful enough to be worth me going back and going through assesment process again? Thanks

I dont have an older child diagnosed but do know the diagnosis is confidential and it is up to you and your DS who you wish to disclose it too. So jobwise it would be up to your son if he wishes to disclose it as its not mandatory.

Perhaps with the right help he will learn coping strategies that minimise anxiety and help him in his adult years

Access to a senco would be great if he suffers from anxiety and needs a private space to go to when stressed. He would then be allowed to remove himself to the area and this may help him in busy times like playtimes, lunchtimes should he prefer to be by himself. He may also get extra tutoring with regards to his english.

Thank you coff33pot. I didn't know it was confidential. That makes it easier for him in the future I suppose.

Another question I have is how long does diagnosis take as he is very anxious and having true panic attacks so need it to be quick I think. I remember we had to wait about 9 months for 1st nhs app. Can GP hurry this up?

'I have is how long does diagnosis take'

That's one of those how long is a piece of string questions, lol, it depends on how your DS presents, the doctor doing the diagnosing and the system for diagnosis in your area...it took 6 years to get my DS diagnosed, I know other people that have had it done in a year - same doctor.

My DS was diagnosed at 13, it actually improved his self esteem loads - he was completely aware of his difficulties and it gave him a reason for them rather than just thinking it was him, if you see what I mean.

I don't know about jobs yet he's 15, lol, but, as far as I know if as an adult it wouldn't affect his capability to do something, there's no need to disclose it...but if something happens directly relating to it, he'd have no comeback as in, he wouldn't be covered by discrimination laws or fail to do something because of lack of support and what have you. For what it's worth, I don't see my DS having any issue with actually doing a job, but I do think it will be helpful for employers to know, if he worked in an office environment there'd be no point putting him in to cover reception for instance, lol.

DS is 13 and having a formal diagnosis undoubtedly helped his integration into Secondary and the support that he receives - in Y8 atm.

Although my DS has only had his diagnosis since May 2011 at the age of 11 we had access to the school SENCO before that. Have you tried speaking to your son's SENCO as they deal with any child that has a problem not only those with special needs?

I found the SENCO at my DS secondary school much more helpful than at his primary and at Secondary schools I believe they have to put in a certain amount of support before a statement can be applied for if thats the outcome you want from a diagnosis?

I wanted a diagnosis as we were getting to the point where there were problem areas of his life and our methods of helping him to cope were no longer effective. As they get older the problems seem to get bigger and lets face it at secondary school they have to fend for themselves. It helped us get him into the school of his choice where he felt the most comfortable and we thought the stress might be a bit less. He is now on school action plus and is on the schools radar so the support is there if and when he needs it. We havent had the support we hoped for from from CAHMS and are very much alone and playing it by ear iykwim?

In other areas the diagnosis has been a mixed blessing, he is embarressed that there is something wrong and in his words not the same as the others but least he understands why he is different and its not a bad thing and he has now started to tell his peers why he does things differently to them and that he has burgers lol. He thought others would be cruel and single him out but luckily that has'nt proved to be the case so far, I think his friends accepted along time ago he is who he is!
He also uses it as a convienient excuse at times, sometimes it is hard to tell what is asd and what is hormonal boy type behaviour

Looking at my family history I think both my Dad and brother have aspergers, if my brother had been diagnosed years ago his life would be very different now and I'm still trying to persuade him to seek help from his GP. I really wish someone had said to me 5 years ago "do you think your DS has asd" as I dont think his problems would have escalated the way they did for him in Yr 6 at school, but hindsight is a wondeful thing!

Only you can decide what is best for your child and you naturally want to do the right thing, remember he might not see its right at the moment but will thank you in the long run!

Hugs & good luck!

Thank you for sharing your stories and experience I appreciate this is sometimes a sensitive issue. I myself have been v worried about my ds but it helps to have advice from those who have already gone through this. Its not easy to talk to friends or even family about this either. Most people just say he'll grow out of it! if i mention anything. It can feel v lonely even though i know there are many people are also facing similar difficulties with their dc's.

You can ask to speak to the SENCo anyway. DS2 was diagnosed at 12, and Statemented in Yr 9. It helped him to understand why he was different and why he didn't just "fit in". School also helped him a lot with Social Skills. He is 17 now and can choose for himself who he tells.

Thanks I will phone tomorrow and ask about senco to see if I can arrange meeting. Don't think we can wait for assesment as it may take a long time from what I read on here. I also phoned autism org helpline and they were very good too.

Went to GP for advice and he suggested private assesment for Ds. He has referred us to a Dr who is v highly respected and experienced with ASD. We would not be able to see her on NHS as list is so long. Think Ds really needs immediate help as panic attacks are really worrying and I don't want to have to keep him off school. Good think is Dr only does private app at weekend so won't mess with school. Bad thing is cost. Has anyone else gone for private assessment? What can I expect? Don't want Ds to be on meds really hoping to try other things first.

I haven't done the private route - but I can't see any of the rest being different.

Diagnosis for ASD's is done on a - identify the issue to put support in place basis rather than medical intervention. I know there are things like anti-anxiety medication, but as far as I know they're not routinely given.

It's more about identifying it to the school so that they can put things in place to support him and stop him getting upset in the first place.

We havent done the private route so cant help you there.

I recently attended a parenting course for parents of children with ASD and they really focused on trying to help lessen the sensory issues of children with ASD that cause the anxiety ie noise, change of routine etc rather than medication. Out of 10 sets of parents none of the children where on medication.

We have found with DS that we had to "teach" him how to help himself when he got anxious as he found he could'nt see past the panic. We did a course of cognative behaviour therapy which helped a bit in teaching us how to help him in situations and times of stress.

The School SENCO should be able to put into places strategies to help your child cope at school.

Couldn't believe it when I saw this thread as it couldn't be more timely. DS3 is nearly 12 in Year 7 at middle school we have seen numerous professionals over the last year and finally the Ed Psych has been into school to observe him. She rang me up earlier in the week and bluntly over the phone says, 'aspergers but you won't get a statement better to work through the school'. I felt this was rather unprofessional especially since she then went on to say 'but we can't diagnose' We started off a year ago by talking to the school SENCO, going to the GP and being referred to the Community Paed, we have seen OT, Physio etc I am very very concerned about his transfer to High School and later life. He has very low self-esteem and is desperate to be considered normal. He hates seeing any of these specialists but a thread in AIBU about a BIL in his 40's whose mum had resisted all help and intervention makes me feel I must fight for a label so he can access all help as he grows older.

Rings a bell here too. I was not sure about label and seeing psyc ect. ESP after what happened with camhs a few yrs ago left us feeling helpless. We waited so long for those app and felt they were not thorough and a waste of time. I did not realise until now that this is common and how many other people have to keep on fighting for the right help and advice. Things have got much more difficult for Ds at secondary so now I feel I wish I had kept on trying. We did not foresee this though.

Ds got dx at 10 ... And he is now nearly 15 in mainstream secondary . I can't imagine how he would have been without it tbh. He has funding for 15 hours a week. English will always be difficult (..."troutboy,...what was the authors intent in this passage? Troutboy: )...but has had quite a lot of help in this area too.
The main advantage for me as far as the dx goes... Is how it improved his feelings about himself. He knew at 10 that he was different and I could see signs that he was beginning to turn it in on himself. The dx allowed him to put it in a box iykwim. It became ' I do this because I have aspergers '.... Not ' I do this because I am a bad person

That is something my ds always says. Why does it always happen to me? I feel so sorry for him because he feels so sad and not got much self esteem anyway so all these knocks making him feel worse. Maybe I have tried to protect him from being labeled but now i think perhaps that very label could help him understand himself and others understand him more.

I am so pleased I have found this thread with so many parents in the same position. I have a DS aged 15 who we are STILL waiting a diagnosis for. We have seen Psych Ed, Paediatrician and CAMHS over the last 18 months and like so many stories on here he suffered most on starting at Secondary school. We had no option but to take him out of his first secondary school as he was struggling in so many areas and they simply had no mechanisms / funding in place to support. As we all know without a formal dx or statement it was pretty much up to me to chase down the SENCO and beg her to help. As he was not struggling academically and was not a trouble maker he was 'off their radar', their words and so struggled. When the bullying got to the point that he wouldnt go in we made the decision to get him out.

The school he is at now are much better but he still struggles socially as they are limited to the level of support dueto funding. However they have a wonderful SENCO who has started a 'lunchtime club'. In reality its the ASD club for the boys who simply cant bear to go into the noise and running around in the playground and it seems to work. The only problem being there are now so many pupils in the club that they need more staff to run it!

I think the hardest thing in all of this has been watching the mix of puberty, low self esteme and starting secondary with the realisation that DS was so different. He always said he felt 'weird' and 'felt different' but we really didnt realise how different. I bought him the book 'alien in the playground' a while ago and it really helped him. Whilst we have never had the formal dx we are being pointed towards aspergers by all the 'experts' so thats how we deal with him. When he was younger if he had a meltdown we used the 5 point scale so now he self regulates his own meltdowns.

Shocking that we have to fight constantly to get what our children need!
XX

Flow, my ds 11 was dx last February and we went privately because of long waiting list etc.He has mild Aspergers and is almost 12 now.The assessment cost £400 and was money well spent.It lasted almost 3 hours in total.We were referred by the school ed.psychologist who ,like you, thought def.Aspergers but obviously cant diagnose herself. We saw a child psychologist who interviewed all 3 of us together initially(me,dh,ds)but ds became very anxious and upset about being discussed by everyone and asked to leave the room.We then had an in-depth interview for over an hour on our own with Dr.basically giving him every detail we could from childhood etc.He asked loads of questions about ds,behaviour,family history,paediatric development,etc.He then saw ds on his own for about half an hour but ds wasn't at his best by then(very anxious etc). He said he def.had Asd with Aspergers but it was mild.
While it came as a real shock to us(we had suspected nothing,it was the school that drew our attention to it-that is the problem I think when it is mild,they just start out as appearing quirky),we are very glad that we went and got the dx when we did.He now has some support at school where he needs it and has some OT sessions with CAMHS but that's about it really.He starts secondary school soon, so at least he will get any support he needs.I think you are definitely doing the right thing going privately-it will be the best money you will spend.
I forgot to say that ds actually took the whole thing quite badly and became very withdrawn,almost depressed for about 6 weeks afterwards.He kept saying" why must I be different etc".It was awful and we were very worried for a while but we simply carried on as normal and he eventually came out of it.We still don't really talk about "Aspergers" much(I try to drop it into conversation now and again,as he will have to accept it as he gets older) but he is happy to accept the support he gets at school and he now also understands why he is obsessed with certain things/likes to rock sometimes etc.Sorry I hadn't intended this to be so long but hopefully it might help you.Good luck and let us know how it goes.I would be very interested to know.

Thank you Penney for adding your experience. This is so helpful as we have dithered for too long. I'm glad there hasn't been any negative story's except of course for long waiting lists. We cant wait for app because panic attacks are terrible so will have to go private. Our 1st app is next week. I was told there would be 4 appointments aprox. Our first will be together then the next just for Ds. 3rd App for parents with assessment results or conclusions on the 4th. I will post after each app. Thanks to all who have given advice and posted their experience which is so helpful.

Hi op we received dx of asd only last month for 15 yr old ds after 6 yrs of resisting dx and very nearly not even attending formal dx meeting due to not wanting my son to be " Labelled ". I can honestly say that i wish he had been diagnosed years ago as all the extra help and support we are receiving now is so whats been missing all these years.

I am finding your experiences really helpful and positive, DS 13 is almost certainty aspergers and has resisted assessment because he does not want a 'label' but with school going so badly wrong for him at the moment and with the help of a wonderful autism outreach teacher we hope he will accept diagnosis and we can get help and support he really needs. Have also requested a statutory assessment last week. To other parents I would say that if you feel as a younger child they are coping well and don't need extra support, it can really change when they go up to secondary school.

Good luck flowwithit!

I have been reading this thread and it has made me realise that all the struggle we have been through trying to get a dx for Dd3 was the right thing to do.

She is in yr 4 at the moment but we started the process 3.5 years ago. She was dxed with ASD although it could easily have been aspergers.

I know she is going to struggle with the move to secondary and your stories back this up. Now that she has a dx she is getting support in school.

All we have to do now is tell her!!

I hope you can all get the support your kids need either with or without a dx.

I agree star-I am dreading the transition to secondary and all it will throw at ds but at least I feel we have got the diagnosis and we will take it from there,rather than waiting until he is older and then going for a dx.It gives him more of a chance from the outset I think.I hope!

We have had our first app. Psyc has confirmed our thoughts. Ds was confused after and then he was very quiet yesterday. I feel so helpless as he says he feels terrible at school and 'you can't help mum because you aren't there' it is breaking my heart even though I have thought for some time it might be Aspergers but for some reason getting this confirmed is hard to take. I feel I also don't know how to tell him? His self esteem is already so low. I was thinking it was best to wait for school hols so he not so stressed. I now need to sort out app with school when I get letter after our next psyc app. If anyone has been through this with older child any advice is helpful. Thanks