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advice on asd assessment

(19 Posts)
determinedmumof2 Thu 07-Apr-16 20:34:39

After six years of fighting the system I have finally got an asd assessment on the 18th April for my son aged 9 I feel worried that he wont get a diagnosis as hs has improved so much with the right interventions he still has major problem but i can now manage these. Please could anyone answer my question to help me relax. I was told that after the 2 hour appointment which I think is a ADOS (play session and parental questions) we would get some feedback.

1) How did other people prepare all for the assessment?
2) What questions did you ask during or wished you had asked?
3) what help as the diagnosis given you?
4) would you provide a list of intervention some are professional and some I have leant myself from workshops and books?

Thank you

lamya190 Thu 07-Apr-16 21:35:30

Hi my son was diagnosed last June. In the first appointment which was 2 hours in March the doc just took a case history and asked us lots and lots of questions. He was then seen by OT, educational psychologist and we got a diagnosis in June. He has high functioning autism doesn't get much help the school he goes to (mainstream) are supporting him well and he is top in reading and maths. We get invited to random speech therapy sessions a block of four or so every so often. We were turned down an ehcp when nursery applied I didn't appeal as wanted to see how he does at school and they have been supporting him well and he has come along way since nursery! If need be later in education i would re apply for an ehcp. I take him to private therapy social skills groups and occupational therapy groups which he has benefitted from a lot. People think once they get a diagnosis they will get a lot of help from the state that's not always the case.

determinedmumof2 Fri 08-Apr-16 10:04:02

Thank you, I'm not looking for any help now as I think I have all the interventions in place already (full ehcp 30 hours 1 to 1, ot, speech therapy, social groups, emotional teaching sessions, aba hone sessions,) but it will help next year with secondary school and hopefully into adult life.

lamya190 Fri 08-Apr-16 21:30:34

That's great, hope all works out for him xx

L1991 Sat 09-Apr-16 13:20:53

Hi, no advice but i just want to say your not alone. DS has an appointment on Tuesday for assessment. We started this process in 2011 when he was 2 1/2 and he is now 7.

I also have fears he will no get a diagnosis and feel extremely anxious about it,which is not like me but i feel we have been really let down and will be again on this occassion. His teacher is not concerned at all and said this in hee report to CAMHs so i think that will effect the assesment.

He has everything in place he could possibly need but like you i worry about secondary school and coping when he is older without a dx.

determinedmumof2 Sat 09-Apr-16 20:25:18

Hello L1991, I understand what you mean by CAMHS letting you down this would be out 3 referral, although this time referral was backed by all professional and LA so hope this will help. Good luck for Tuesday hope you get all your answers, let me know how you get on please x

L1991 Wed 13-Apr-16 10:53:35

Had the ADOS yesterday, DS done module 3 but they said they were going to add a bit of module 2 in due to his speech and language.

they gave us no advice on how it went or how he scored. I'm feeling really anxious about it all and really want it over and done with. I think we will go for a private diagnosis if they are not able to diagnose him.

The speech and language therapist did say having observed him in school she can see exactly why i am concerned, which is a relief. Why do we get made to feel by many professionals that we are making it up?

Got to go back and complete the history part i think its the ADI? because we couldnt complete it in 3 hours and then we will know results.

our next appointment is May 17th which feels like a long time away.

Good Luck with the assessment for your son.

determinedmumof2 Wed 13-Apr-16 15:09:26

Thanks for the update, I'm glad that you ds coped with the assessment, and that the speech therapist agrees with your concerns.
I cant believe you have to wait another month to find out the result, this would drive me mad. I'm so worried about wait for the result as ds is having another terrible week have not took part in any lessons we need dx to get link placement with special school x

L1991 Wed 13-Apr-16 20:04:53

It looks like it will be 2 months by the time they look at all the information. around June time, thing i will go crazy.

I totally understand your worry because i feel the same, would love to hear how you get on x

Herschellmum Wed 13-Apr-16 22:33:04

My son has a pen ADOS level 3, scored moderate ASD, they said ten didn't feel taht he was "that autistic" (that comimg from a ASD consultant) then did a level 2 just 2 weeks later and scared 1 point under mild ASD and we were discharged. I would insist it's recorded, my first was but the didn't for For the second.

Not sure much can be done to prepare, it scores things like if they have imagination and answer to their name, if they can have a conversation etc.

determinedmumof2 Mon 18-Apr-16 18:35:18

Update - son completed module 3 ADOS today by himself was suggested by them for me to not go in to watch as they wanted to assess his sensory and anxiety issues without my reassurance however it was recorded so they will send me a cope of the dvd with the written report. They would not give any detail as they wanted to check a few details with the school, should get a verbal feedback and possibly dx within two weeks. They seemed more concerned with the sensory and anxiety problem, no sure what it mean guess I've got another two week wait. sad

L1991 Tue 19-Apr-16 08:55:18

I hope you get the diagnosis you need for him. At least they recorded it. Ours didnt do that so i will never have any idea how it went. Just the dreaded wait now. Its horrible sad

determinedmumof2 Tue 19-Apr-16 09:36:05

I agree the wait is horrible at least my wait is small compared to yours flowers its the what if that bothers me. The assessment has it toll as son not in school today as still on edge after yesterday and then to find out he would have has a supply teacher, Staff looked at him and said may be we should let him calm down today and come back tomorrow .shock

Blossom90 Thu 12-May-16 07:42:50

Determined mum of 2. How did it go?did you get a diagnosis?

determinedmumof2 Thu 12-May-16 08:05:16

Unfortunately I am still waiting angry, I called Camhs yesterday, and was told that they are behind on their admin work, but should get a call within a week.

Candypops14 Sun 15-May-16 10:29:17

My son has just got diagnosed, at the Ados appoinment they went out to discuss his score then came back and told us straight away, hope you get the diagnosis x

Blossom90 Sun 15-May-16 11:08:47

Hope you get the call soon. I cant wait for it all to be over x

determinedmumof2 Wed 18-May-16 11:39:42

Just wanted to say thank you for everyone's kind words and support.
Today I have finally received a dx of asd for my son, still waiting for report but CAMHS confirmed the dx. I'm feeling relieved but also angry that it has taken so long. My next battle will be for OT hopefully it will not be so hard with a dx.

tartanterror Wed 18-May-16 18:36:24

Glad to hear that you got your dx and I hope you get the support you need soon

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