Aibu to complain about lack of diagnosis after 6 years of waiting?

[Makinganewthinghappen]

I have a 10 year old daughter who was first referred for assesment for autism at 4 and we have been passed around different doctors and at this point the paediatrician has told us she is pretty sure she is autistic but we still don’t have an actual diagnosis as far as I know. By age 6 school had become impossible and so we started home educating.

Anyway as she gets older her mood is increasingly difficult to deal with. It feels like she goes out of her way to be difficult and her demands are getting unreasonable. The differences between her and other kids her age are becoming more and more obvious as she gets older.

I am struggling with her refusal to do what she is asked - her demands for the opposite of what she has (if I gave her a mint ice cream for example she would demand vanilla - if I gave her vanilla she would demand mint).

It’s extremely difficult to spend time with her alone, and she refuses to take part in family activities. She just wants to sit with her headphones on watching the same videos over and over or drawing the same pictures over and over.

I have been so incredibly patient and polite with things, even when I have had her screaming at biting me trying to get her to go to appointments, I have pulled her out from under chairs in waiting rooms while she growled and hissed at me. I just want someone to tell me if she is actually autistic or is there something else - I need help!

I have another phone call scheduled for 2 weeks time (for whatever reason they call every six months or so - the calls don’t actually help or move things along) . If after this call I still don’t have any answers AIBU to make a complaint about the length of time this has taken?

I don’t like being difficult but I am finding not knowing what is happening very difficult now.

Hi @Makinganewthinghappen I have a 6 year old only recently diagnosed with Autism and possibly ADHD which will be assessed at a later date. We waited a long time for doctors to decide if an assessment was required and like you we have been going through this process since age 2.
I eventually lost patience with the system and we funded a private assessment with an approved psychologist. It was expensive but I'm glad we did it. After the diagnosis we received a lot more help from school in the form of movement breaks and social skills lessons. There is a definite improvement however we now have to fund everything else privately such at OT and ongoing psychology due to long waiting lists.
I feel for you, ot is a very tough road and we definitely noticed the differences between our daughter and other girls her age not long after she started school... these differences seem even more obvious as time has gone on.
Have you actually asked for her to be assessed? I know that sounds like a stupid question but our doctors were just keeping up appointments with our daughter to keep record etc and it actually took me asking for an assessment before she was put on the list, we then found out the waiting list was over 3 years so we privately funded.
Can you afford a private assessment ?

We have asked for her to be assessed the last reply we got was that the paediatrician was sure she was autistic and she would probably be happy to diagnose WITHOUT (I forget the name of the assesment ) but without that assesment which seemed odd. But that was a year ago and I have no idea what is going on with that. We have now completed and sent back so many forms, as have other people such as her karate teacher even!

You still come under the school nurse, have you contacted them for help ?

It is difficult though ! Someone recent,ly asked me “what’s wrong with her ?” I have no idea what to say. It doesn’t help that she is tall and looks older than her age anyway!

Dinosaur - yes but they said without a diagnosis it’s difficult to access extra support. She did contact the paediatrician who sent us more forms and advised us to apply for the child disability benefit ( I can’t remover the name) since I can’t work now so we rely on DHs income alone.

I applied and was refused - although I felt bad applying anyway.

Suggest you get her back into school ASAP and apply for an EHCP. Also ask GP and school SENCO about Umbrella Pathway. This is the route to get a diagnosis on the NHS. You can apply for the EHCP before she gets a formal diagnosis.

YANBU. my son was under a pediatrician from the age of 18 months and is now 8 (9 in december) and only got diagnosed last month.
I was being fobbed off by his school and his other pediatrician. so I moved him to a brand new school (which killed me a little inside because he hated the change of routine, and having to make new friends) and asked for a different pediatrician. within 2 appointments with the new one he was diagnosed with autism and adhd.
so much time had been wasted in the form of his learning and development. I'm so angry that he could of got help he needed alot earlier instead of struggling his way through school for so long.
I wanted to make a complaint about his old pediatrician that fobbed him off for so long but had no idea where to complain to as she was the "head" pediatrician.