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Original poster

dont know what to do about son with poss AS

14 replies

mumneedshelp · 02/04/2006 18:29

my son as always been different never played with toys only computer always needed routin as obsessive disorder ,repetative speech dis like of cloths bad eater the list gose on. it took us 6 yrs for somone to listen and refer him to a pedatr he said my son had ADHD& AS but it took us 2 yrs to get a formal assesthey saw him for 40 mins asked me some questions then told me my son dint have AS i told them i wasnt happy so the pedatr made a meeting with school there the teacher told of how he was at school the pedrat said she had a better picture but he missed 1 tick on the assesment form she said he ad autistic traits but didnt fill the criterea in a formal asses because he had improved in 2 yrs which is down to me & my hubbys patients she as refered him to difrnt pheropists for anxiaty and motor skills .she said they will asses him again in 10 months time to see if he had improved again and if he had he hasnt got AS but if hes getting all this help hes going to improve hisnt he?what shall i do ,has anyone else gone through this? please help all i seem to do is cry lately because i dont know what to do but im the one thet knows my son best should they also be looking at his past when he was at his worst? if he had had his asses 2yrs ago i know the out come would be diffrent he would have been dx with As for shore thankyou to onyone how can help

OP posts:
lars · 02/04/2006 18:53

Hi mumneedshelp, Yes i've had a terrible 2 years to get the correct diagnoisis for my ds.
I can understand why you are confused and frustrated. It may be worth contacting the autistic society they can offer some information free to you. Is it worth asking for a second opinion? as it appears you are no further forward. In my experience they don't always like labelling children until 8 yrs, which was when my ds was diagnoised, also you don't always have to fit all the boxes to have AS. You may need an expert in the field to clarify if your ds has this or not. Hope this helps , good luck. larsxx

PutAPeachyInYourSimnelCake · 02/04/2006 19:31

Hi

Have you spoken to Jenk1, she is in this postion- as sadly am I. This 'autistic traits' thing is a complete cop out isn't it? Firtunately ds1 is being reassessed urgently.

Deffo try thr national autistic society, they keep me sane. My son (6) also goes to a place called BIBIC, have a look at www.bibic.org.uk, you don't need a diagnosis and they can help with funding.

I am sending you my sympathies. I was close to a breakdown last week over this (my ds has violent behaviours). If you need a chat do feel free to CAT me.

Peachy X

Original poster
mumneedshelp · 02/04/2006 19:44

thankyou for your support and advice. has your son improved with age ? mine has but he still has the routines and ocd and other behaveour probs they say becouse hes improved he hasnt got AS but this cant be right can it?they say they with see him again in 10 months but to me if he hasnot got it now what differanse will 10 months make . when i read the symptoms of AS i feel they fit my son

OP posts:
Blossomhill · 02/04/2006 19:47

Hi Peachy

Sorry to hijack but was wondering if it would be okay if I contacted you? As our children do sound similar. Bloss x

PutAPeachyInYourSimnelCake · 03/04/2006 09:22

Course it would, Bloss. be nice Grin

PutAPeachyInYourSimnelCake · 03/04/2006 09:26

Sam hasn't improved with age, but a lot of kids do learn to handle situations... that may be what is happening to your son.

What i would say is that a friend of mine got a dx for her daughter last week (well, actually got their American dx recognised here) but was told that there was nothing they could offer to help. Sam is on a register of disabilities held by the Council which gets him things like free access to leisure facillities but I had to organise that myself by calling in a children and disabilities social worker: you could try for that, if nothing else it bags me an hour a week when he is at SN Rugby to nip to Asda or do ds2's homework with him.

I would seriously try the NAS though, their info sheets are fab, and BIBIC coz theya ctually offer strategies for changing behaviours.

jenk1 · 03/04/2006 09:42

Hello, yes as Peachy has said we are in the same situation as you.
After a year of battling with CAMHS,psycholgists etc we contacted NAS and got the name of a specialist who does private work.

He came to visit DS last week and spent a couple of hours and he said definately AS, no doubt about it.
IMO DS anxiety has gotten worse as he has got older and its so bad atm that he is out of school with a home tutor calling once a week.
PLease feel free to CAT me if you want to as i know how you feel, its awful, i had a breakdown a month ago and DH is now working part time hours to help me out.
Sending you hugs.
Jen
xx

coppertop · 03/04/2006 10:13

Both of my boys have AS/ASD. I completely understand how frustrating it is when you find ways to help, your child makes progress, and then you hear "Well they don't seem to have a problem with X so we'll wait and see." This happened with ds2 (3yrs). Luckily we did get the diagnosis after the year-long wait.

Ds1 (almost 6yrs old) has improved over time. At pre-school he was very obviously autistic. He is now at the milder end of the spectrum.

Pisces · 04/04/2006 00:36

Hello Mumneedshelp

My son was formally dx at 9 years old. We went through years of him being labelled as a "naughty boy". CAHMS finally dx him. They also explained that at about 9 years old, this is the best time to firmly dx a child as being on the Autistic Spectrum (if they are HFA/Aspergers) as there are many other conditions which have similar traits e.g. Dyxpraxia, EBD which are just two of the conditions that our GP and his first school thought.

Keep plugging away at the medical professionals. I had to fight, scream, fax and phone for many weeks before they took me seriously! Don't ever give up. They "hate" parents who perserve and bug them constantly but sadly, sometimes this is what we have to do. YOU KNOW YOUR CHILD BETTER THAN THEY EVER WILL.

Original poster
mumneedshelp · 04/04/2006 21:12

thankyou everyone for your kind support i cant beleive there are so many people in the same situation as me its sad to think all these children are getting over looked when it is at school when they need the help most. the docs and specialests and other medics should all read this site they would get a better understanding of AS

OP posts:
Original poster
mumneedshelp · 06/04/2006 12:43

bump :)

OP posts:
Original poster
mumneedshelp · 06/04/2006 13:02

started home videoing ds, do you thing pedatr will watch it ? doing it with out ds knowing as i dont want them to say hes playing up for camara.also started keeping a diary of bad days. hopfully this will help.

OP posts:
coppertop · 06/04/2006 13:35

i made a video of ds2 for his assessment. I wanted them to see ds2's ability to be happy one second and then in a screaming rage the next. I also videoed his repetitive play. All the staff watched it. One person even wanted to use it as part of a presentation she was giving.

lars · 06/04/2006 13:41

I did a video of my ds as well, but to be honest I didn't think it help me to get the correct diagnoisis in my case. But I still think its worth doing. larsxx

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