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Privately diagnosied with Autism....but what next?

Sherbert555

Hi

After being repeatly let down and failed by 'the system' we decided to skip a step and take my son privately to be diagnoised, he is due to start school in September and as he doesn't speak so we were very concerned that this was not going to be sorted in time.

They confirmed he had ASD, and suggested we go back to our doctor so he can refer us to the right channels.  We did this, he told us that we still had to see an NHS doctor to confirm the diagnosis which takes 18 weeks so we are right back where we started.  But then I spoke to a local help centre who has said that you shouldn't have to get it confirmed.

I've got no idea what comes next, what we should be asking for or how to get answers?

He already has speech therapy and has been in and out of that for a year, no one seems to talk to each other, we moved boroughs and you think we had moved country at how difficult its been transfering him across and we get told different things from different people.

Basically I'm just wondering if anyone else went down this route and knows what the next step is and what I need to do to get it in place.

Stupid question, I obviously have a copy of the report but are you supposed to get some sort of official bit of paper that confirms it?

I feel completely in the dark, confused and frustrated.  

If anyone has help or advice of a similar situation I would be grateful

Parents

  • Hello Sherbert555

      I too, went down the private route for diagnosis of other elements of my sons needs, but he was also looked at by NHS practioners. Although it seems that as I'd had most of the assessments done, it was merely that they referred to our reports in their reports and made some minor additions by way of observations.

    On the whole, the private reports were way more extensive and thorough, so i'm glad I had them done. It did speed the process for us, but only in that we could commence support at home, tailored to our findings. It also allowed us to persue the statementing process to support our son in the education process. Placement at the right School was key here.

    If you have other reports or findings you may need to look at the same thing although the process may have moved beyond statementing in your area to the EHC Plans.

    It is very frustrating I know, but at least you have the answer now. Perhaps the NHS need merely to sign off on the diagnosis.

    I suggest you read up as best you can on Autism and co-occuring conditions, It's like your son may need support in other areas not yet identified, so the consultant can refer you for that.

    With the speech issue, contemplate learning to sign whilst you speak to your son. We found this very helpful in the early stages, although our sons speaks now.

    It is a long process, but try and get as much info as you can together in preparation. Services are strapped on the Autism front now so you will probably find that much of what needs to be done or needs to be assessed or fought for, will have to be parent driven.

    I know it's frustrating but I hope the above is helpful. Please ask here if you have any other questions.

    Kind Regards

    Coogy  

     

Reply

  • Hello Sherbert555

      I too, went down the private route for diagnosis of other elements of my sons needs, but he was also looked at by NHS practioners. Although it seems that as I'd had most of the assessments done, it was merely that they referred to our reports in their reports and made some minor additions by way of observations.

    On the whole, the private reports were way more extensive and thorough, so i'm glad I had them done. It did speed the process for us, but only in that we could commence support at home, tailored to our findings. It also allowed us to persue the statementing process to support our son in the education process. Placement at the right School was key here.

    If you have other reports or findings you may need to look at the same thing although the process may have moved beyond statementing in your area to the EHC Plans.

    It is very frustrating I know, but at least you have the answer now. Perhaps the NHS need merely to sign off on the diagnosis.

    I suggest you read up as best you can on Autism and co-occuring conditions, It's like your son may need support in other areas not yet identified, so the consultant can refer you for that.

    With the speech issue, contemplate learning to sign whilst you speak to your son. We found this very helpful in the early stages, although our sons speaks now.

    It is a long process, but try and get as much info as you can together in preparation. Services are strapped on the Autism front now so you will probably find that much of what needs to be done or needs to be assessed or fought for, will have to be parent driven.

    I know it's frustrating but I hope the above is helpful. Please ask here if you have any other questions.

    Kind Regards

    Coogy  

     

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