My 11 year old daughter has been on the pathway for years throughout covid with online consultations. We finally had the long promised face to face appointment with a community paediatrican we have not seen before. My daughter did not want to attend the appointment as she is sick of appointments and does not want to be seen as different but I persuaded her to go as I had been told that this would be the last appointment.
What happened in that appointment and where we go now I'm not sure. Maybe I was being very naive putting my trust in my local service and I should have thoroughly researched autism diagnosis and had an understanding of what signs they were looking for.
This is my account of the appointment. I would be very interested to hear any thoughts, anyone had a similar experience and where I go from here.
We got to the appointment - had to agree to buy her another pet, so it will cost me a lot.
Where we go from here I don't know. The doctor declared she hasn't got autism. I said I'm very surprised you can just sit there and declare that as she has an EHCP primary need autism He also said "this isn't going well". I said no it isn't . He disagreed that this was the last appointment so you can imagine how that made her feel, she said she doesn't like him and says she's never seeing him again, as she only came because I assured her this was the last appointment and she just needed to answer a few questions.
It felt very awkward when we went in, sat a long way away from him. He said words to the effect 'tell me about concerns and problems'. I don't have any I said. Have you had concerns but they are now resolved. Yes I said. He asked her about her friends. She said she had 3. He asked nothing about what she does with these friends, how often she sees them, who they are. He asked nothing about any issues with friends. He asked her what she likes doing, I can't remember what she said first, but she said reading as she is very competitive and there is a reading challenge at school, so she is hyperfocused and reading lots. She is academically capable. He said he wanted to get some tips about how to read books fast and gave her a book with no text , she flipped through the book stating one thing in the pictures on each page, then began saying in my ear, I'm bored I want to go, repeatedly at regular intervals. He asked her what she wants to do when she leaves school. She said she wants to be an artist and a hairdresser. He said that's a problem those two don't go together. So she offered, bless her, that she could do art as a hobby. I have been encouraging her to do both as that's what she wants, and has done as long ago as pre-school and I see no reason why she can't.
He then was asking me if I knew about DSM 4. I found it so hard to understand him, sitting so far away, and she struggled more, him having to repeat 3 times then me translate. He started on the first one to illustrate why she doesn't have autism and I stopped him there and asked him if he'd actually read the EHCP. If he can read that and not realise she has problems with communication and peers I'm surprised. He repeated the birth questions we had had with the previous paediatrician. He then asked about delays. I don't know I said; I didn't have that in my head at the time. She has been different since she was born, but I refuse to label that a problem or concern. He asked me no broken down questions about what delays these might be so I was unable to answer any further.
I also made it clear to him that I live with autism daily, I am autistic, I teach children who are autistic and I have absolutely no problem or concerns about having a daughter who is autistic.
I also told him it wasn't easy to talk about problems and concerns in front of her. Why he said? I provided no answer.
The decision is made by a panel he said. Yes I said like the EHCP. Do you want to me to send her to the panel. Yes that's why we are here I said.
I don't think I managed to communicate to him that the reason our problems and concerns are over is because we are so well supported after being through utter hell and despair. She has an extensive EHCP at a school where the staff are trained to work with autism, she is going to go to a school that is a specialist autism school (I know the terminology is not correct), I have done courses and had so much one to one help from the children's disabilities team. We are on it. She is a wonderful girl and things are going well. Has she suddenly turned in to a neuro typical girl and left all her autism traits behind, no and she's never going to.
So what the doctor is going to report I have no idea.
What is needed to make an autism diagnosis, I don't know.
To really cap it off he weighed and measured her at the end appointment and declared in shock how heavy she was, saying it twice. To hear him declare that to an 11 year old girl alarmed me deeply.
If I am going to speak to the doctor again I need support in the room with me.
He mentioned she had to see a speech therapist which confused me as I thought all the reports were ready. There was something the disability nurses said the speech therapist could help with but I can't remember now. I'll have it written down somewhere.
