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Please tell me your 'story' .....

2 replies

Claire2009 · 15/07/2012 21:15

By 'story' I mean diagnosis.

Here is our 'story' so far ;

Speech & Language ; DS has been under speech therapy since he was 2yo, he was a late talker, and despite 4 lots of hearing tests he required some help. He is 5yo and has speech & lang twice a week in school. His last report from SALT said he had significant difficulties with understanding, he failed single word verbs, two word/three & four word sentences, scoring 2,3,4 rather than between 7-13.

He has 'absences' where it appears he just switches off, his eyes go into stare-out like mode and he is unaware of his surroundings, he can be gone from 10 secs - 2mins, he has had a 3 day eeg where he had several absence spells, but this is not due to epilepsy, his paed (Dr.A) referred him onto another paed to have an assessment for autism.

We have seen the new paed (Dr.M) about 7-8wks ago, his report states that DS either has a receptive language disorder, or autism. He is seeing DS again in a few weeks time, he has referred him onto OT (for his sensory issues - hair washing/cutting/combing, teeth brushing) and a clinical Psychologist.

He has also been referred to CIT (communication interaction team) on the advice of his SALT.

Ed.Psych came into observe him and do some 1;1 on Weds (11th July), I met with her later that afternoon and she said "DS has very, very complex needs, don't expect a quick diagnosis here, Dr.M is going to have a hard time".... EP is back again Sep/Oct to see DS again.

In the meantime, we are in 'limbo' land. SENCO has said as a school they will deal with it as 'He has AS tendancies, and be VERY aware of them' (he doesn't feel pain, doesn't see right from wrong etc). That is all well, but I almost want a label for him, he is not a naughty child, he has special needs - what we do not exactly know what yet....

If ok, I will update as we progress through our journey.

OP posts:
lisad123 · 15/07/2012 23:57

The wait is awful, caused more pain than the dx itself.
You sound like you have all the correct people on board and working fairly quickly. Don't worry too much about the EP they like making sweeping statements and then leaving you stood there.
They are right, start treating like he has autism, it will make a huge difference.

Ineedalife · 16/07/2012 10:36

I agrree with lisad, the best bit of advice i was given during the lengthy diagnosis for Dd3 was to treat her as if she does has ASD because it cant do any harm and might help.

We started using lots of visuals at home and time related warnings, eg in 10 mins is bathtime, in 5 mins its bathtime, in 2 mins,1min.

We have a visual timetable for getting ready for school. And a yellow and red card for behaviour.

At school she has done groups about understanding emotions and conversation sharing.

Ask on here for advice about anything, there is always someone about who can help.

Good luckSmile

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