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

Flowwithit - its perfectly natural to feel the way you are feeling now after the confirmation, I have been through every emotion going including feeling guilty that I hadnt instigated a referral before we got to breaking point.

My DS reaction to his dx was mixed, relief that he knew why he was doing things differently to his peers but also embarresment that he was different and also worried that others would'nt understand. There have been quite a few programs recently about people with ASD/Aspergers and we have encouraged him to watch them so he knows he isnt the only one out there.

I have had the same conversation about school and me not being there with my DS many times. However working with the school we have taught DS that when "Mum" is not around he must rely on his other support networks ie in school his mentor or form tutor both of whom really "get" him and support him at times when he really needs a bit of reasurance thats been invaluable and I'm sure what has made him keep going to school.

Does your child have a IEP yet? You need to sit down with your childs school SENCO & tutor and make sure all areas are discussed where he needs support and how they are going to help him achieve it.

HTH

I sat down my DS and pretty much just told him... they think you have AS, gave him a brief description of it and that's why you're having difficulty with XYZ and gave him some books to read including Freaks, Geeks and Asperger's Syndrome and left it to sink in a bit.

We've since watched some documentaries oh and the Temple Grandin* film (which I'm sure is on Sky Atlantic on Sunday night again, I was keeping an eye out for it for a friend.) and had some pretty long discussions about it.

I've always stressed that there is nothing wrong with him, he's not faulty, just different - We're all running our brains on Windows and he's a Mac, they're different systems and there's massive incompatibility issues with some things, but one's not broken. (Though if you're into computers you might not agree with that, lol)

He's at the point now where he thinks he's superior to other teenagers as they don't make sense, lol, slightly irritating, but really nice as well after having low self esteem for years.

*She doesn't have AS, she is more profoundly autistic, but it the film raised a lot of the different not lesser issues and showed that even with a lot of difficulties she still could excel in what she was good at.

Thank you joe.... I have booked an appointment with form tutor next wk.
I like the idea of windows and mac I think he could relate to that better. He had asked me what the doctor has said to do but I just said we are still trying to figure it out. I may have a chat with him over weekend.

Well at least the wheels are in motion now flow and this will really benefit your ds in the long run. I agree it is still extremely difficult to hear it confirmed even though you knew it yourself already. It takes a while to come to terms with it all-I still struggle almost a year later! I found it very hard when I saw it all written down in reports etc,especially the word 'autism' . Your ds is older than mine so he is more mature and I think he will probably be ok with accepting the dx after a while. it may be difficult initially but he might find it helpful as he is bound to find school life easier once the school know and start offering him support. I am glad the process is now under way for you and am sending you lots of hugs and support. Keep us posted!

Ds not much different still panic stricken about school. Mon morn will be very difficult! Can't wait till half term. Got school app with senco this wk to arrange ed psyc. Assesment. Can anyone fill me in on what this involves please?

Flowwithit - The SENCO needs your permission to have your child evaluated by the ed psyc who will then sit in during a lesson and observe your child. They will then feed back their thoughts and findings to the SENCO and then yourself. I believe its usually the first step to a referral to CAHMS etc but sure someone will correct me if I am wrong!

Our experience with the ed psyc wasnt a positive one I'm afraid as my DS was on top form that day and was the model student infact the report showed him to be in the top 5% of his year group and thriving (he was in primary school yr 6). They had'nt witnessed him crying under a table or clinging to me like a baby just because I was leaving the house without him!

Luckily my GP made the referral for us and had listened and believed what we were saying.

Flow, our experience with the ed.psych. was really positive.She did a classroom assessment and then met independantly with ds for a "chat". She gave us 'connors questionnaire ' etc to fill in and met myself and dh a few days later and gave us her feelings,advice etc.She then referred us to a private child psych.once we had decided to go privately. Ds actually really liked her and met her about 3 times in total over the past year at school and began to confide in her etc. I think the ed.psych assessment is really based on observing the child and assessing him accademically.Then of course interviewing the parents and interviewing the teacher .Sorry, completely forgot to say ,obviously,she did an in-depth educational assessment with ds which lasted about an hour I think.He said he had to do lots of sorting puzzles, answering simple maths problems, writing simple sentances, reading,problem solving etc. She was then able to tell us that overall he scored an average result,education wise, for a child his age.He was 10 at the time so I am not sure if its similar in secondary school or not.Its surely something similar-good luck.

Thank you again penny and joe. I feel better knowing what to expect. Ds anxiety is still bad and meds have been discussed. Even though I was dead against this we are now thinking it might be worth a try at v small dose even for placebo effect.

I think meds can have a useful place if its a toss-up between a very anxious child and a much more stable,evenly balanced child.Especially if the dose is small and the child really benefits from it.I too would have been dead against this initially but am now accepting that it is an option that must remain open as we don't know how things will progress as ds gets older.

Ds anxiety has been so bad we have had to try meds at v small dose to try and help dr said prob will need to have higher dose to work but might help him as placebo. We have seen slight improvement and no panic attacks yet! Which is good ESP. On a Monday. School said they got no budget for ed psyc. ? Think they expect us to pay? I going to get EPA capsules too as many seem to recommend. I ordered AS book that seems to be written v basic to read with him when we tell him. We have decided to be open and v matter of fact so he does not think he is ill or wrong ect. Hopefully?

i am amazed that the school are setting up an Ed.Psych.appt and are expecting ye to foot the bill? Would you consider starting another thread asking peoples advice on this because there are tons of mums on this board who are very experienced on the rights,entitlements etc and what the school is obliged to do etc? I am a bit clueless I'm afraid and realise we have been lucky so far with ds.But then maybe secondary school is different? You are bound to get sound advice on this Flow from others who know far more than I do. Glad your ds is a bit improved!

Thanks penny that's a good idea as I wasn't sure what to expect. School said they not sure if there is any budget left for ed psyc and they think it might be a long time before they could get an appointment? Not v helpful at all and recognised private ed psyc fees over 1000! Thats for 1 app. And then written assessment. Senco teacher only had chat on phone and didn't ask to meet us either which I thought was odd.

Ds has AS diagnosis now its sinking in, we will all be told by dr psyc at next app. So he can ask questions ect and school have now agreed to arrange ed psy, but senco teacher seems quite unemotional and not what you would expect for the job? Ds has been v upset tonight about hating school and saying he cant get on with anyone also coz he has lost some of the erasers he collected and I can't find them anywhere! Some were collected from places 2 hrs away and he wants to know what date I will take him there to replace them! Ds behaviour and difficulties seem to have go so much worse so quickly and I am not sleeping either with the worry for him.

Glad to hear school have come round Flow-presume they will fund it!Just been reading your other thread-lots of different advice there(learned lots myself just reading it). Sorry to hear your ds is still upset -is he still on the small amount of med? I can just imagine how the problem with the 'erasers' is panning out if this is one of his 'special interests' etc.I was just wondering how much he knows about the private assessments etc-is he aware what its all about? We were going through all this exactly a year ago and I would definitely say that ds's behaviour was very anxious /unsettled etc at the time and for some time afterwards also. It was definitely related to dx as he hates feeling different ,why me etc and would take none of the positives/playing it down etc on board.But he came out of it and we are just carrying on as normal.He gets his support in school, I read up on everything available and we just act normal with him-we have only told a handful of people that needed to know.He is worse sometimes than others but overall he is doing fine with a minimum of support and I think your ds will possibly be the same in time.All this fuss/appts./assess need to die down and he might relax a little also-is it manifesting itself in his behaviour? With our lad it certainly was the case. I really hope things improve for you- this is a horribly hard time Flow-I remember it so well from last year-I felt exhausted when it was all done but glad we did it also.Take heart from the fact that you are doing all you can and it can only benefit him in the long run. -and it will!

Thanks Penney for encouraging kind words. School are paying which is great but senco teacher seems v uncaring which worries me. He says one of the teachers is picking on him too Ds is still on meds which may be increased as he finding things v difficult at the moment. I hope this is just short term though. He is also tearful eg over erasers! and normally he hardly ever cries about anything. I had long chat and he is more aware of differences than i realised Eg. everyone else is fine with it how come I'm not? So it's probably right time to explain things to him and then other Dc too. MN has been great and lots of v helpful posts. Thanks to all! It's always good to hear experiences. Autism. Org got v good helpline too, they were brilliant. I'm also reading tony attwood book which is giving me better understanding. Got grandparents the Jude welton book as they were upset when told about dx coz they not patitent and often said to Ds 'what's the matter with you!' or 'why did you say that its silly' and didn't understand why he so difficult at mealtimes or going out somewhere. We are all now on road to better understanding which he deserves despite all the negative things I have said about difficulties ect he is such a lovely clever boy who wants to do his best and be loved.

Taken a few steps forward this wk. Got Ds bk to school for 1/2 days now and inc meds seem to be helping. Psyc put off telling him about dx because he was so upset it was not the right time.
He is always asking why is this happening to me and no one else in my class is like this, so i have now talked to him about maybe there is a reason you feel like this, and maybe the dr will know more when we got to next app.
School applied for ed psyc. We had good meeting with Senco so i think psyc letter to school helped. Do you know if I should pay for private SALT to get more detailed info? Is that inc in school ed psyc.
I feel so guilty not pushing more for dx with camhs when he was 7 yrs.And just accepting, so now I feel I need to gather as much info to help him as quick as I can. No idea how long school ed psyc app wait will be but I could book SALT private for April sometime. Any advice pls?

Please can anyone tell me if the tests that ed psyc do are similar to SALT tests? School have sent request for LA ed psyc but I am concerned it won't be v comprehensive. My Ds is 11 now so want to get info ASAP to help him as he is so unhappy. Should I book private SALT? And have LA ed psyc? Thanks

I dont know much about SALT flow- we didnt need to use one for ds. Why do you feel he needs this? Does he have speech and language problems? Dont beat yourself up about not getting him dx sooner-hindsight is a great thing! we've all been there! We certainly have and that is the problem with Aspergers isnt it-it becomes more noticeable as they get older .we suspected nothing until the school called us in when ds was 10.Looking back now I cant believe we didnt notice it sooner ourselves.. Ds was just like yours flow-"why am I like this ?"He became very down about it etc. He was dx exactly a year ago and we just left it really,didnt mention it much to him etc as it upset him and lo and behold ,out of the blue last week , he asked me one night if there was a book he could read about Aspergers and then asked when we first found out about it etc.Obviously he has begun to accept it a little a year later. He is almost 12 now and I also was desperate to get as much help as quickly as I could given his age but apart from some extra support at school he seems to be ok at the moment.I hope the ed.psych appt.is not too far away as this will help your ds a lot with school support etc. He will probably come to terms with it in his own time flow-just make light of it as in some people have dyslexia, others have asthma, others have to wear glasses etc-it just means you think a little differently etc,Thats what I keep telling ds anyway!

My DS was dx'd at 15. A private Ed Pysch report would give you a good indication of his strengths, weaknesses and specific learning difficulties. It would tell you the degree to which he has defecits in socail and communication skills. It's to improve those skills that SALT input would be needed. So I would say definitely obtain private Ed Psych report rather than SALT report to start with.
LA Ed Pysch assessments are rarely more than just cursory. They don't go looking for difficulties that their employers, the LA, would have to find money to support.
My DS was dx's privately and later, by the NHS too. When he was given the dx he was very relieved to realise their was a reason why he felt different to his peers. One thing that the Clinical Psychologist stressed was the 'positive' aspects of Aspergers e.g. she told DS about all the famous people who have been diagnosed with Aspergers. (There are websites showing these).

Thanks again Penney for your reply. He doesn't seem to have speech Lang probs but psychiatrist recommended SALT and ed psyc as well not sure why? She did mention social communication difficulties and poor working memory.
It's great to hear from someone who is further down the dx line than us. I have worried about it so much coz he is so sad at the moment. He has lots of TLC but it's not really helping much so feel I am best trying to do practical stuff. Good idea re dyslexia ect thanks. We have got him in 1/2 days now so that's a good start.

Cross post flow. Our ed. psych(through school ) spent a good hour with ds at school giving him various little tests as in maths, english ,asking him to draw things etc and had a good chat with him etc and another day she interviewed myself and dh for about an hour and then she obviously had teacher feedback etc, She also did a classroom observation on him and also in the playground I think. Then she reported back and made recommendations about getting a private dx etc. I dont know though about SALT assessment though.You could try wording a new thread maybe flow to get the attention of the mums who are expert on this sort of thing- bound to be lots who have had both SALT and ed.psych assessments.

Thanks wetaugust I think I need private ed psyc then but will school be peeved at using their budget to get LA ed psyc if we go ahead and do it privately. Do I tell them not to bother as we would rather get it done ASAP or do u just have both done?

Don't tell school about the private assessment flow. I didn't. If you do they will be likely to cancel the LA Ed Pysch. Get both.
You'll be amazed at the difference in depth between the 2. DS's LA Ed Pysch report was 2 sheets of A4 and very cursory. The private report was 30 pages long after a 3 hour battery of tests and very comprehensive. Pick a good private Ed Pysch - the good ones usually have long waiting lists.

Also, you should be considering applying for a Statement of Educational Needs. As he's unable to attend school full-time and has been referred to agencies other than school (Ed Pysch), he should at least be on School Action Plus level of SEN support and as his difficulties have been long-term and will probably remain for the forseeable future, he probably needs a Statement.

I think wetaugust has just sorted your problem Flow thankfully. I keep forgetting to say that I am not in the UK but in Ireland so while the system is similar it is also quite different in some respects IYSWIM.