Dinky is growing

I am constantly amazed by Dinky, more often since starting her special school.

She is just growing and achieving beyond what I thought was possible 18 months ago. Readers are going to start getting bored of me praising the school, but I cant thank them enough.

Dinky’s communication has improved a lot.. she has always been a talker but not a fantastic communicator, I learnt very early on that the two aren’t mutually exclusive. Now she can tell me when she feels sad and instead of running off, she will ask for something.

I laughed so hard the other morning when I had this conversation with Dinky (she was in a state of lower anxiety which was great)…

Me: Yes you can have a snack once you are dressed

So with my help she gets her t-shirt, pants and trousers on… and promptly runs out of the room…

me: where are you going? You’re not dressed yet

Dinky comes back to the door- looks at me with deep concentration on her face as she sees me holding up a pair of socks… She motions to her top and trousers and

Dinky: Technically… Dressed!

Me: But you haven’t got your socks on (I was trying so hard not to laugh)

Dinky: Not Nakie (naked)

She won that one- I tried so so hard not to laugh! I put her socks on while she had an apple.

I was just so proud of her being able to use a technicality to get her way. I know most parents would be annoyed, but technically it is my own fault for not specifying which items of clothing constituted being dressed and as she frequently runs around the house and school without socks- to her they are an optional extra.

Progress shouldn’t be monitored by exams and tests… it is the little things that can be a sign of great progress.

 

School questionnaires shouldnt rule out assessments

This seems really obvious, but week in and week out I am reading posts in Autism groups where schools are saying things are fine when they clearly are not.

I went through this with Dinky and it almost led to her not getting an autism assessment because of what both schools said- and now look at her in a specialist independent ASD school, the cost of her placement alone could pay for 27 mainstream school placements.

So why are schools given so much power over diagnosis… Money.

It is cheaper to send a non-medically trained teacher who probably thinks Sheldon Cooper and ‘rain man’ are 2 of the 3 variations of autism (the other being a non-verbal person rocking in a corner possibly flapping and with or without ear defenders on), who has spent a total of one teacher training day on autism, a questionnaire- than it is to send a person trained in autism to pick up the more subtle signs of autism.

This morning I read that a child is not being seen by CAMHS because she is ‘good’ in school.

I am sorry what now?

Since when does being ‘good’ equal not autistic?

Are autistic people bad?

No we  bloody well aren’t! We are more than capable of being ‘good’ and we pick up on all those things that others say about the ‘odd’ things we do and we try not to do them to fit in.

This poor kid is probably trying so hard to be like everyone else and it is that which is making her needs go unnoticed. But there will be signs that all is not as it seems. There will be social communication issues and interaction issues that don’t quite seem right.

A school teacher with 30 kids, lesson plans to do, homework to mark, a head teacher pushing them to meet targets, a senco asking what three different kids are doing and how their work is being differentiated, a school trip to plan and risk assess, and a class pet to keep alive- plus possibly a partner and children at home.. isn’t going to have the time or energy to look for these signs.

so the questionnaire comes in and the teacher says they don’t see any of the things from that child. That child doesn’t strike the teacher as much different to the rest. All primary kids have their little quirks, but autism? Then the paediatrician or consultant at camhs reads it and says ‘behaviour not seen across all areas… stick them on a parenting course’… and then goes for the next one in a bundle of ‘cases’ they got that morning.

I can see how it gets done, I see how these kids get missed, and it is only really the parents of the children who carry on banging or whose children get fed up of trying to be like everyone else it seems like their autism came ‘out of nowhere’… and THEN they get seen and diagnosed after a 2 year waiting list.

Money.

If there was more money for assessments then they could train people (or use LEA autism outreach/social communication teams – as the need is there so the child may well need support in school) to go in and make a preliminary report for the consultant. Taking the pressure off the teacher and a more accurate assessment of how the child presents in school.

It was just that, which got Dinky her diagnosis. Social communication team and the educational psychologist came into school and I was able to use their reports to prove that she showed autistic behaviours in school despite the schools insistence that she didn’t- even with the report they sent to the paediatrician which stated that she had trouble socialising, had behavioural problems, didn’t like change or transitions, didn’t like loud or crowded places and needed to be in control.

Schools are NOT autism specialists.

Often Parents believe that schools refuse to acknowledge because then they have to put in funding for things. They say there are no issues because then they have to use their tiny pot of money on support for the child.

Again it is all about money.

When is it going to be about the children?

Is it a wonder that often young people and young adults with autism suffer from depression and anxiety, when their needs have been dismissed for so long due to costings?

Would a teacher/head teacher/senco be happy if that was their child?

The school questionnaires should not stop a child or young person getting an autism assessment.