It is one thing for your child to be diagnosed with ASD- Autistic Spectrum Disorder… It is quite something else when your child’s ASD comes in the form of PDA. Add in the fact that Dinky is a girl and 6 and things get more tricky.
Just over the last few days and weeks I have really seen how different PDA is seen locally, however I am very sure I am not alone.
First problem is schooling- finding a school that actually understands PDA is hard enough, finding a special school that not only understands PDA AND takes children as young as 6- really, really hard. Finding a special school for a girl with PDA and 6… Well, we haven’t found one yet that truly understands. Some say they do, but then they say silly things like ‘isn’t PDA another name for ODD’ or ‘PDA that’s learnt behaviour’.
Then there is the complete LACK of understanding in the autism world.
Most people haven’t heard of PDA. The local autism charity, after I complained a few months ago, have HAD to take children with PDA, and therefore ran training courses for the staff.
I spoke to one of the staff, she fortunately wanted a head start and asked to borrow my copy of ‘understanding PDA in children by Phil Christie et al’ before the day training.
Afterwards she asked me some questions… The trainer said “no one in the UK has a diagnosis of PDA” – to which the person said ‘yes there is the person who lent me this book (showed them the book), her daughter was diagnosed last week with ASD-PDA.’
Apparently more things were completely misunderstood. Apparently people with PDA do not manipulate a situation and PDA is ‘fundamentally different to autism’- no PDA is a separate condition to classic autism, much like Asperger Syndrome is a separate condition to classic autism- yet ALL THREE are autistic spectrum disorders. They are fundamentally similar, but there are several things that differentiate PDA from the other autistic spectrum conditions- WHILE remaining one of them.
Parents of more traditionally autistic children ranging from non verbal classically autistic children up to children with high functioning autism/ Asperger Syndrome.
Apparently my child’s diagnosis means nothing because she can talk
“it’s not like x and y, dinky deliberately did x, even though I TOLD her not to”
Really? So when your kids do it, it’s ok because they are autistic but when dinky does it, must be the mother as dinky deliberately did it? I was unaware that the theory of mind aspect of autism suddenly resolves itself when they talk?!? Dinky has PDA you telling her not to is not going to work you might as well have told it to the brick wall. If you had ASKED me why she was ignoring you, I could have explained it and gone and tried to explain it myself.
However I had previously read a Facebook post by the wonderful ‘cat on a trampoline’ about autism and how when they get a thought in their head, no amount of persuasion, distraction, or anything else will stop them doing the thing that entered their heads nor repeating that process over and over.
For a person with 2 autistic children, you would think they would understand how these things work. The wife was lovely and had no issues with Dinky’s behaviour (apart from one issue with sharing, but once I explained what had happened, it was fine).
I went to a special needs evening tonight at the local soft play centre and I must admit I was hacked off for a number of reasons!
First of all, I had two kids to look after, one was my new friends son who dinky likes very much, and dinky. The lad has ASD, ADHD and a few other issues and can be quite a handful.
So the first thing to bug me was that another child’s 1:1 respite provider was too busy doing her paper work to see that this child was antagonising Dinky. I stepped in gently as he isn’t my child. Then she allows him, without asking me, to bring his dinner to our table and she carried on doing her thing. So I was now looking after 3 children, 2 with ASD and other complications and a child who was diagnosed with autistic traits but has little impulse control, and behaviour difficulties.
I had my hands full but apparently that didn’t come across enough!
She carried on ignoring him while he targeted dinky and after the third time I had to stop dinky punching him in the face, I had enough and went over to the respite worker, who was sat the furthest away from the play frame as she could get, and explained that the child she was supposed to be looking after was being rough and aggressive to several children, not to mention dinky but the last straw was him picking up a ride on toy and trying to hit dinky with it for no apparent reason.
I don’t have an issue with children with difficulties, however I believe if the worker was doing her job, his behaviour wouldn’t have escalated.
Then I spoke to a few parents.
One parent couldn’t believe dinky needed a special school ‘because she talks so well’ yes, about lego or the game she wants everyone to play, but how does that transfer to learning for a demand avoidant child?
Dinky was in a small car and was happy going round and round (when the lad from before wasn’t trying to pull her out of it, hit her with other toys or punch her through the ‘window). Another child wanted it.. Now, dinky is called dinky for a reason, she was at last height check, in the 25th percentile for height so shorter than the average 6 year old, another child cried because they wanted it. This child is the same height as dinky but in the 75th percentile height for a 4 year old- so is the same height as dinky. This 4 year old also has ASD and while academically on target has very little functional language although is no way considered non verbal. The parent looked at me like I was going to pull dinky out or ask dinky to get out because she is older and is more verbal.
No way! There is no way I would upset dinky when she has every right to be in the car. She would not understand that a child the same height was younger, even if they were smaller she probably still wouldn’t understand. Also it would be setting a bad example to her because she would use that as an example to kick bigger children off stuff.
Dinky was doing nothing wrong… The 4 year old was left to cry. The parent was left to berate me to other parents because i wouldn’t let her ‘more autistic’ child have what they wanted! Although I don’t see how the other child is ‘more autistic’- differently autistic yes, but dinky struggles a lot.
Another parent with a child with moderate autism who attends the local special school- who once said “dinky wouldn’t be eligible for the school”- came to talk about how rubbish our LEA are at amendments. She asked if I had a school yet… I said no. She said the special school should be able to take her. I was taken aback at the complete turn around! I said the lea wouldn’t place her there, then when she said they have children with worse behaviour problems I rather lost my temper! I told her the LEA said Dinky’s PDA was too severe for this school. She cut me off asking if the school themselves believe that. I told her that the school likened PDA to ODD and that is not the case, PDA is NOT like ODD. But we hadn’t been offered this special school anyway, but they don’t understand the condition. Dinky doesn’t have behavioural problems, she is autistic.
I’m fed up with people who do not understand PDA, trying to tell me what schools Dinky can go to.
Even last week or the week before, I had yet another discussion with the autism charity about dinky and again they showed a complete lack of knowledge about the actual impact of PDA on a child. She actually said “find a school to meet ‘most’ of Dinky’s needs”… Most? So which ones do I leave out? The biggest issue dinky has is PDA and the one need I can’t get met is PDA.
I don’t know why people assume I turned down the local special school… I wasn’t even offered it as an option for Dinky.
However I’m sure my dealings in the special needs and autism world would have been easier over the last 2 years, but the last 4 weeks especially, if dinky had been a more typically autistic boy. However if she had of been a boy she probably would have been diagnosed earlier and got more help in her first school.
There is good news. The diagnosis has meant I had more sway with the LEA and now ALL MENTION OF BESD HAS BEEN REMOVED!!! I’m just waiting for the final statement to come in the post. They have agreed to all of my amendments.
Dinky’s profile has been sent via the dynamic placement scheme (DPS), so hopefully some schools will come forward and I can go visit some soon.
I guess I’m just adjusting to life with a child with a hidden disability that is even shunned in the autism world, a world she is supposed to belong to… I have complained about the autism charity and said that they are discriminating against dinky on the grounds that she has PDA.