Well, it wasn’t an unmitigated disaster. Which I can only be thankful for, however I don’t believe that it was a useful exercise. Maybe the next one in three months will be different.
I will attempt to replay the meeting the best I can. My dad was there but didn’t talk to me or the paed. I made certain he realised that I was the one who was in charge. My daughter, he can put a point in if I ask for back up (he completely took over an appointment with the GP regarding Camhs before I had heard of PDA, he shouted at her and me… so it is not just me being rude).
P = paed
Me is short enough
We walk in, dad tried to get dinky to sit in a chair she wants to sit in a different one, paed asked her to sit in one near him. She found some bubbles and was blowing them. He introduced himself. I told him who I was, who my dad was and left Dinky to introduce herself.
P to dinky: what are you doing?
Dinky ignores him/ engrossed in bubble blowing
P repeats it three times
P: what do you have there?
She gives momentary eye contact.
P: how old are you?
Repeats as she is blowing bubbles
P: what is your name?
P: what is your fathers name
D: I don’t have one
Then she goes back to playing bubbles and sits near my dad.
He said he had read my comments on the form, and has the schools report and he is not concerned about autism. I said that that is interesting as Autism ‘spectrum’ was mentioned to me, and by several people before I would accept it. PDA sums dinky up as a person, and I believe is worth investigating.he said he hasn’t heard of it. He asked for the criteria. So I told him, and he said… Hat isn’t autism. Well no, it isn’t classic autism… I said, but isn’t autism a spectrum?
He said from meeting her (we had been there 5 minutes), that that along with her not sleeping would suggest ADHD not Autism. He said he wasn’t ruling PDA out as he didn’t know what it was and said she may well have PDA, and it could be that they will have to send her to someone who specialises in it.
( YES PLEASE!)
But first he wants to do the ADHD assessment. sad face
He went through some questions and to be fair the answers could elude to PDA, ASD, or ADHD.
P: well, I would say that she definitely seems to have ADHD, what does she do when she is supposed to be going to sleep?
At that point dinky is playing with the scales unsure of what they are…
D: what is that? (she then taps his arm) what is that?
P: they are scales for weighing.
Dinky went back to doing what she was doing with my dad and he laughed,
P: autistic children don’t do that.
I was thinking some imaginative swear words! Because apparently i had been told no autistic child can ask a question about their surroundings. Well they may have to call my ex friend back because her son was forever asking what was in the cupboards, or what something did and trashed the place ‘exploring’. The same CDC diagnosed ASD!
I can’t remember what she did, or if it was something I said she had done, but he again laughed and muttered.
P: very clever, not autistic.
So now autistic children can not be clever! I would love him to say that to Temple Grandin!
We were going through my worries, everytime I mentioned something he would say… ADHD. It was actually starting to bug me as I have done enough research to know that my answers also meant PDA. Of course he is a muppet, because even thought he works in an autism spectrum clinic, he doesn’t know all there is to know about autism spectrum disorders/ conditions.
He asked if there were signs of autism or ADHD on either side of her family. He asked about her birth and development. When I mentioned speech and language he was taken aback. I showed him the speech and language assessment. He kept writing. He got dinky to stand on the scales, and he asked her to get on the bed, she wouldn’t, so I had to joke with her to get her up there. He checked her heart and felt her abdomen. What that has to do with ASD or ADHD I have no idea. Maybe he just likes to look more doctory or just likes to use his stethoscope!
I mentioned the spinning and the sensitivity to noises. He said that a child with ADHD can have traits of this or that.
Basically he was doing the very thing I thought he would think I was doing. He had pegged her as ADHD so dismissed anything which pointed to the fact that that might co exist with ASD or even PDA.
I almost hit the roof when he mentioned ODD and attachment issues! He asked if she liked animals when I said yes, she loves cats (although can be a tad heavy handed with them), dogs and horses. He ruled out attachment disorder.
I had to make the point that being oppositionally defiant and demand avoidant, were two very separate and different things. My daughter happened to be the latter.
It is said
A child with ODD will:
-deliberately take the most difficult path, eg to say ‘no’ on principle
-enjoy challenging and arguing with people
-refuse to do what he’s told.
It’s common for a child with ODD to blame everyone else for his problems, and at his worst he can be angry, spiteful and vindictive.
Whereas a child with PDA is consumed by anxiety. Dinky will not say no on principle, or deliberately take the difficult path. She doesn’t enjoy arguing, as her main get out of demands is to run or hide. She does refuse to do as she is told but not in an oppositional way. Dinky is definitely anything but spiteful and vindictive. I am very annoyed that he would put ODD into the frame before having read up on PDA.
He doesn’t know or understand my child.
He said what he needs is a link to Camhs in the form of a primary health worker, which integrated services lady already said she would do. He also said I should request an ed psych visit at school. He was glad she was going to be seen by NHS SaLT.
Dinky said she was hungry so I got her some melon and gapes out of my bag.
P: what you eating
D: Melon and grapes
P: I like grapes
So dinky pulls out a grape and gives it to the paediatrician.
P: autistic kids don’t do that.
So apparently autistic children don’t give someone something they say they like (which they happen not to like).
There must be other parents of children with ASD or PDA that can tell me I am not going mad and that the 5 or so minutes that he spent interacting with my child, and the three things he mentioned means dinky can not be autistic, has to be wrong…. right?
He did say he was going to make the ADHD assessment for 3 months time, that he was going to send the school another ASD form and asked me to give them one of the ADHD ones he was handing me (which probably means he WON’T send out an ASD form, because he could have just given it to me).
He said I could ask the GP for melatonin for her getting to sleep and would write in his letter that he was writing back to them.
He finished by saying that he would rule out or in ADHD which he thinks is likely and then look at possibly ASD/PDA after.
I gave him the NAS printout and copies of her school report, IEP and swim report.
I told him he has 3 months in which to acquaint himself with PDA.
Obviously there was more to it, the questions asked and answers, I told him somewhere in there my main concerns. I didn’t get to list them all as he was dismissing all my concerns. If it comes to it I will ask for the referral to a PDA specialist. If he is going to dismiss it without knowledge of it then I have to get a second opinion for dinky’s sake.
So there you have it.
Not ASD, highly likely ADHD, possibly PDA but he doesn’t know what that is.
I’m not sure if that counts as a good day or not.
I guess it could be worse. He could refuse point blank to acknowledge PDA and refuse to refer. So semi win.
I kind of agree with the ADHD thing, but would say it was a part of having ASD. In any case it is not stand alone.