Been told dd could be autistic but they won't test her

[smurff]

Hi, dd is nearly 4yrs old, we've always suspected autism and at my dd child development centre we were told there is a possibility she is, she has global development delay but is making good progress, obviously even though we suspected autism it was still a huge shock but we were really glad we were close to finding out what was wrong, 2 days later my dd teacher said she had spoken to pediatrion and they said there was no point testing her because she is completely delayed on everything it would be hard to tell autism from just being delayed so they want to leave her longer to see if she catches up. Obviously were happy that it could be just a case of her taking longer to develop but it will be another 6 month's till they decide weather to test her then it's over 6 months to get the test done. Has anyone else gone through anything similar

 

[Reid]

My son's been through the diagnosis process and was confirmed autistic in October last year. It's a long process mainly because the waiting lists (in the uk)
I actually got a local councillor to help as I was 1st told 6 months for waiting to get an appointment for the assessment that came and went and was then told it would be another 6 months to wait and I wasn't having it. He'd waited over 9 months for speech therapy and I wanted diagnosis before we made a decision on schooling for him. With the diagnosis it's helped to push for the specilaist asd school In our area. He's in a asd nursery and was there pre diagnosis but he had been observed by educational psychologist speech and language the early years children's support officer along with the specialist nursery manager (who has 30 plus years working with asd) plus the mainstream nursery wasn't coping we were awaiting the autism assessment at that point
Not sure if any of thag helps you but if you have any questions ill answer them as best I can for you xx

 

[Nibblenic]

Average age for diagnosis in the UK is 9 :/ More complicated cases where there are other factors sometimes later.

What I would say is that clearly your DD has interventions in place and its just being left with no input. There is no magic wand once you get a diagnosis, there are no treatments just help, which really you are most likely already getting in some forms

 

[sethsmummy]

I know how frustrating it can be waiting. We waited for almost 4 years, ds1 was diagnosed September 30th 2015 after it first being mentioned october 2011. It was a long haul and from the start of the actual diagnosis process it took 2 years!

where i am they have brought in a new system so its 18 months start to finish.

as another person said tbh theres no added things after diagnosis.. infact weve discovered people pull out because you have your diagnosis! if your daughter has help already in place then this wont change so i dont think waiting a little longer will make much of a difference to that side of things. But i 100% understand your frustration because in the end we just wanted our answer.. we wanted to know 100% if he was autistic or not. We're not starting to go through it all with ds2 but its much harder because hes never had anybody involved in his care (ds1 did from day 1) and theyre trying to tell us its copied behaviour so were going to have a fight on our hands. xxx

just keep pushing it, once these 6 months are up push, push and push some more until you get proper answers and dont settle for anything less. xx

 

[huggybear]

My son was diagnosed when he was 5. He was first flagged in nursery when he was 3. He has been seeing a SLT from the age of 2 and Peadeatrician who he saw every 6 months. With this information plus input from school the Pead then did the disco assessment where he got his diagnoses. Nothing has really changed since he was diagnosed, he gets more help in school but he needs more one to one, but it's always a constant battle, more resources are needed but with local authority budget cuts, there's never enough money in the pot, it's very frustrating .😡

 

[smurff]

I must say I'm very lucky, my dd is getting so much support, we have an amazing hv, we had only lived hear a few weeks and within a few weeks she had realised there was a prob and she got us in for apps with peadiatrions eye tests and hearing tests straight away and she had development tests done straight away. We got speech Therapist within a month and we got brilliant support at her Nursary. My dd had one app with speech Therapist and Therapist realised she needed more help and got her into a child development Centre. My dd has been going since January and lady incharge who is also incharge of helping parents sort out extra help and schooling pulled me to one side and told me about autism, and the fact she'd need lots of help at school. I left my dd at the centre for her 2hrs and by the time I'd come back the lady in charge had set up meetings with a specialist school near me, a meeting with dd other nursary so she can see her in a diff environment, she got my dd an app with top pediatrician in county and has started an health assessment form which dd nursary will fill out aswell as her development centre and speech Therapist and pediatrician and me and her father, this form would then be sent off to our local council. This will entitle her to go to top of the list for any school we chose and it will give that school extra funding to help our dd. I realise we are extremely lucky to have this help and it's a comfort to know that everything poss is being done for our dd, she has an amazing support network behind her. The lady from child development centre even comes to my home if ever I need a chat or help with anything. I do understand why they ain't testing her and like her teacher and peadiatrion have said, giving her a label isn't important, what's important is understanding what our daughter needs now and how to help her. Who knows maybe in a few months we won't want to know as some others have said, it won't change anything, she'll still go to the school we choose and get the same help weather she has autism or not.

 

[Nibblenic]

I must say I'm very lucky, my dd is getting so much support, we have an amazing hv, we had only lived hear a few weeks and within a few weeks she had realised there was a prob and she got us in for apps with peadiatrions eye tests and hearing tests straight away and she had development tests done straight away. We got speech Therapist within a month and we got brilliant support at her Nursary. My dd had one app with speech Therapist and Therapist realised she needed more help and got her into a child development Centre. My dd has been going since January and lady incharge who is also incharge of helping parents sort out extra help and schooling pulled me to one side and told me about autism, and the fact she'd need lots of help at school. I left my dd at the centre for her 2hrs and by the time I'd come back the lady in charge had set up meetings with a specialist school near me, a meeting with dd other nursary so she can see her in a diff environment, she got my dd an app with top pediatrician in county and has started an health assessment form which dd nursary will fill out aswell as her development centre and speech Therapist and pediatrician and me and her father, this form would then be sent off to our local council. This will entitle her to go to top of the list for any school we chose and it will give that school extra funding to help our dd. I realise we are extremely lucky to have this help and it's a comfort to know that everything poss is being done for our dd, she has an amazing support network behind her. The lady from child development centre even comes to my home if ever I need a chat or help with anything. I do understand why they ain't testing her and like her teacher and peadiatrion have said, giving her a label isn't important, what's important is understanding what our daughter needs now and how to help her. Who knows maybe in a few months we won't want to know as some others have said, it won't change anything, she'll still go to the school we choose and get the same help weather she has autism or not.

That sounds like a brilliant amount of support and help. In fact more than I have heard of the vast majority of people are getting. Labels dont make a difference, as long as she and you are getting the support. She will be who she is. I would also say its better to get the right labels and especially when there is developmental delay it can be difficult to wean everything out. If she does have ASD she will have it for the rest of her life, just as she would have any other neuro developmental condition. ITs easy to say but with all the help you are getting I would go with the flow of that, everything else will fall into place around it given time