I got Dinky’s diagnostic report today!
I first read it on the bus on the way back from picking it up at the CDC.
A few things got my attention but dinky really got the bulk of my attention. I did notice that the paediatrician has referred dinky to CAMHS… This is the 6th time!
I also noticed that she seems to have gone back on the idea that PDA IS an autism spectrum condition as her diagnosis list from the report are as follows
1. Autistic spectrum Disorder
2. Pathological demand avoidance
3. Significant hyperactivity, impulsivity, attention and concentration difficulties
4. Sensory integration difficulties
5. Sleep difficulties
I didn’t re read the report until after this happened…..
Now, I have been trying to speak to the SEN team manager for 2 months!
Tonight he phoned me!
We discussed the diagnosis and how that changes the BESD on her statement. He said they had received the diagnostic report but he had to read it yet.
He said now that the diagnosis has been formalised he now agrees BESD wouldn’t be good.
He said they have sent out a profile on the DPS (dynamic placement scheme). I spoke to the other contact I had in the sen team earlier in the week and she described it to me as they send out the profile with no name and address with a description of need to non maintained and out of county special schools on a list.
They then contact the sen team and ask for more info and are then sent the proposed statement.
So I explained that this actually would be pointless given the fact that the very core of the statement is wrong, and not just that, the strategies used by teachers with experience of BESD are completely counter productive, as I have pointed out previously by Dinky’s 9 exclusions in 10 school weeks 8 of which came from nurture- a mini EBD unit.
He actually agreed. He tried to say Dinky still had behaviour issues, but I said that these are best defined by her social communication difficulty and that just by looking at her diagnosis letter they can see that she hadn’t been diagnosed with a behaviour disorder, she has been diagnosed with a social communication disorder. I completely get that Dinky doesn’t fit into their predetermined boxes but the right strategies have to be used NOW.
We discussed placements close to home and why they would not be suitable. He is going to reissue the DPS on the amended statement when he gets round to it on Tuesday. As the one they sent out last week had provisional diagnosis of PDA and didn’t mention autism, I said PDA IS AUTISM. Either way autistic spectrum disorder is on her diagnosis alongside PDA.
He is going to contact me as soon as schools have expressed interest in Dinky’s case or before hand as he wants to have a meeting with ‘relevant professionals’ so I have invited him to the child in need meeting that is being set up soon(ish).
I did say that this needs to be done ASAP because schools will be closing soon and I want to go into the summer holidays knowing which school Dinky will be going to considering her statement should have been completed by may 30th!
After this call and getting dinky sorted, I re read Dinky’s diagnostic report.
They really caught how deep Dinky’s social communication difficulties are, at some points I was shocked. I could see what they were saying, but I never assumed it was that bad as I was predominantly focusing on the PDA aspects.
My parenting was praised as was my knowledge of dinky.
It seems if she didn’t have the extreme demand avoidance then she would have been given an ASD diagnosis as she has some quite deep social communication difficulties and repetitive and restrictive behaviour and interests.
They say she may need a high level of support irrespective of the educational setting.
They talk about her possible ADHD and many reports they have seen discuss her ADHD traits, they also noticed many attention difficulties.
Now it is hitting me that Dinky’s autism was far more complex then even I anticipated.
It is one thing to fight for your child’s needs to be recognised, it is another to see they are worse than you even thought they were.