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Another spanner in the works for diagnosis

(9 Posts)
Skylar123 Thu 13-Mar-14 15:42:34

Ds going for ADOS in a few weeks. SLT therpist who is conducting the ADOS has been into school to observe. Said all pretty normal, signs of rigidness and need to control and some lack of attention at times but no signs of being on spectrum, no social interaction issues notice, no lack of facial expressions. nothing!

Ds is a completely different boy once he walls through those school gates. Am I going mad? His is private dx a load of tosh, why is it not being picked up at school ? It's taken 4 years for Ds to make friends at school and he has a few friends now.
All the red flags are there from when he was young, family, friends all see it.
When he is observed at school he's fine.
I know nhs won't dx him I'm going round In circles !!

Ineedmorepatience Thu 13-Mar-14 16:23:27

An SLT is not qualified to diagnose Asd or not. She also cannot base her decision on one observation.

He should be assessed properly, the ADOS is a part of the process along with observations and discussion with parents and school staff.
He should also have a formal SLT assessment to check his higher level language skills as difficulties with these can also indicate Asd!!

Try not to worry, your journey isnt over yet!

StarlightMcKingsThree Thu 13-Mar-14 23:09:51

I dunno. I just met a mother who told me that a SALT had just referred her ds for an ADOS as she suspects ASD because the child won't engage with her.

I know this child and I know the SALT, and whilst I wouldn't dare say he 'hasn't' got ASD, my hypothesis is that he won't engage with her because she's incompetent and boring as feck.

I'm not a huge fan of the SALT profession I'm afraid, though they do seem to be caring people, they talk a lot of shite.

Skylar123 Fri 14-Mar-14 07:14:14

I'm ready to give up now I can't fight this anymore.
On the one hand I have a regular salt (not the one doing ADOS) telling me his difficulties are down to his autism , camhs said can't do anything as all part of his condition , then I have no one noticing any behaviour that fits whilst in school and paed telling me he can't be on the spectrum as asd is in all settings. I assumed Ds was just keeping himself together at school , he is very complex. Paed even told me that she thinks Ds actually really likes school , I fight to get him there every morning so that really made me feel quite annoyed she has met him twice .
I guess it will take time and only time will tell but right now it all feels like a waste of time and effort

Skylar123 Fri 14-Mar-14 07:28:57

Salt who is doing ADOS apparently does 4 per week and is very experienced. She and the paed will make the decisions to dx or not. ADOS salt has been very understanding and believes everything I have said and thinks perhaps Ds is very complex and doesn't doubt he has 'something' paed just thinks I'm a rubbish mum who doesn't know her son very well by the sounds of it. Paed said it's an ongoing thing that may not unravel itself anytime soon she has no doubt there is emotional issues with Ds .
However the salt who observed at school said Ds likes to control things and she is right. He has to have an element of control all the time.

bochead Fri 14-Mar-14 08:30:49

keep a behavior diary while waiting for the appointment - it does help

Skylar123 Fri 14-Mar-14 10:07:41

Yes I agree . I do have a list of behaviours.what kind of things do I need to write, everything? Things he says, does, etc?
I can only assume that when Ds has ADOS he will score above cut offs for autism. He has already had an ADOS 9 mths ago. Surely that can't change. If a child passes high enough on two ADOS they have to question more seriously what is going on. Ds has social skills classes at school three times a week.

wasuup3000 Fri 14-Mar-14 11:40:48

Has anyone used the TALC assessment as this can pick up on inference difficulties I think?

Jerbil Sat 15-Mar-14 05:59:15

Diary everything! I even took a picture of my son sat on the floor at a party with hands over ears while everyone else played. Quite a powerful message when you do this.

Also, do not lose hope. We had to go for a second opinion. These individuals who are currently involved are just that individuals. They do not represent the NHS as a whole and there are different professionals out there.

Have to say with regard to SALt I've had both experiences. One who said DS1 was very particular and during sessions would need to line his teddies up before he sat down, and would sit under the table and go round the table 3 times before he did each activity. But he had eye contact on that day so wasn't showing signs of ASD! Now we have SALt involved, ok she's a bit more specialised in ASD. Has massive experience and when I talk to her she would respond in a way where I thought she knew my son inside out and that was at a point where she'd never met him.

Just see this part as a stepping stone. But remember you are all your child has at the end of the day, so you will be able to be there for them. It's tiring, emotionally draining and frustrating when you have a child who is so good at school but things will eventually show up. I never accepted that. But now ds1 is in year 3! School now cannot cope with his behaviours. He's not disruptive, not to anyone but himself, but the Amount of care he needs now is surpassing what they can deliver without additional funding

Don't give up. You will get there, you know your kid! X

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