speech therapist report, autism pathway, TROG result

(5 Posts)
bumbumbee Tue 20-Jun-17 20:55:55

hi everyone, I haven't posted for quite a while but I need some advice.
My son is in reception and struggling, we have suspected ASD since he was 2 but were told by the Dr to wait until he was older to see how he would develop before taking it further. he's since seen an educational psychologist at nursery, who agreed it was likely ASD and she referred us back to the Dr who then referred us to a paediatrician. the paediatrician also agreed possible ASD so she referred us to the autism pathway, they received all DS' reports and discussed him at a panel meeting. It was decided that he should be seen by a speech therapist at school and I've just received the report.
it states DS talks in varying sentences but often speaks about things completely unrelated to the discussion topic without any background (usually Thomas the tank engine as he is obsessed with it)
Conversation is all on his terms.
His eye contact is variable although better in 1:1 but still less than it should be for his age.
He has a flat facial expression but can follow an eye gaze cue when his attention is focussed.
Play was on his terms, usually wanting to play trains. laying on the floor to watch the wheels turn at eye level.
The curriculum is completely differentiated to engage him in learning.
He was rolling back and forth on the floor for no reason and refused to go inside after break until he had seen the lights stop flashing on the train crossing over the road.
He was often distracted but also often very focussed gazing in to the distance.
He needed lots of support to focus his attention
his speech was sometimes unclear but he was able to repeat clearly.
He was reluctant to follow instructions and needed class instructions to be individualised by name and repeated.
He ran in an atypical manner with his arms out behind his back and was heard echoing numbers whilst watching a TV programme. In general talk he used phrases repeated from Thomas the tank engine.
He did not interact with other children other than in situations where he got into conflict.
His learning abilities were reported to be slightly below average and His rate of learning very slow. he has fine motor difficulties and uses an immature palmer grip.
He presented with limited use of his imagination, rigidity atypical sensory responses immature play and difficulties with social communication.
His TROG score was less than the first percentile.

Thank you to anyone who has read this far I do really appreciate it!
This report has been sent back to the panel who will decide weather to diagnose or have him seen by a clinical psychologist for further assessment.
I understand that the TROG score means that out of 100, 99 would do better but I was surprised he scored so low in understanding grammar whilst being able to speak relatively well.
this is just a snapshot and I'm constantly told not to expect a diagnosis because its hard to diagnose correctly especially at a young age.
I'm sorry this is so jumbled but I'm a bit lost. I don't know what to expect now and there hasn't been much communication from the hospital I've been chasing everything up constantly and with various staff being on leave it has been quite drawn out.

He's quite a handful at home. he can be violent, He's very strong, even pulls doors off hinges, breaks everything. needs things to be perfect food not too hot or too cold, drinks the perfect depth and everything done now, he has no patience. He runs off across roads and in to peoples houses so I keep my doors locked. he wears a wrist link while we are out but hates it and gets angry and violent.
I suppose my questions are, can anyone explain the TROG score better or tell me what this means for him? and what advice can you offer to me to help him if he does or doesn't get a diagnosis?
thank you again for reading.

OP’s posts: |
The1andonlyFrusso Wed 21-Jun-17 08:27:59

Message withdrawn at poster's request.

bumbumbee Wed 21-Jun-17 16:39:32

I just wrote a full reply and lost it confused thanks The1andonlyFrusso lots of good advice. we are doing everything you suggested. definitely will be looking into OT as DS also has hypermobility.
wrist links are definitely hell but DS is too big and strong for reins, he also drops to the floor and bursts out of them. we had been putting them on as something to grab but he's so quick always heads straight for the road. I think its time to invest in reins for older children.
We use a clock visual timetable with pictures around the outside but he just uses it to spin the hands so it never tells the correct time. We also use flash cards but he really doesn't pay attention so i usually end up left faffing with them as he seizes the opportunity to bolt.
I do need to work on starting with his name. I also think she was getting at a developmental delay but the school have been great at tailoring work to his abilities but I'm not sure how they will keep that up as he gets older and further behind with the curriculum. thanks for explaining TROG that helps. flowers

OP’s posts: |
notgivingin789 Thu 22-Jun-17 18:31:23

I'm actually quite angry on your behalf on the doctor who sent you away, when you first initiated that your DS may have autism.

I do not know about the scores or about the test. But from your description of your DS and what other professional have said, I think he is likely to get a diagnosis of Autism. Children with developmental delays, have a delay in all area, having a disorder is different (spiky profile).

bumbumbee Fri 23-Jun-17 15:41:29

Thank you notgivingin789 I'm quite angry too, it shouldn't be so hard to get here but I can see why they would want to let him develop more. It just doesn't make sense that it takes so long especially when it starts impacting his school life. I think we should hear something back from the panel within a month but I'm not expecting any support. we just needed to get him seen because of his lack of danger awareness. I wanted it to be taken seriously. Our family are only just realising how hard it's been. DF was chasing him around a field a couple of weeks ago because he didn't take me seriously when I said don't let go of his hand. FIL did the same at the beach and he wouldn't stay away from the water. makes me terrified to let him out of my sight. he always heads for danger. Just hoping the professionals have seen enough.

OP’s posts: |

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