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Help with getting a referral for diagnosis, no support from school

ThePinkFlamingo

Our son is 12 years old and about a year ago he read a book written by Libby Scott, a teenager with autism. He came to me saying that he thought he could be autistic. We have always been aware of his quirks and I believe he probably is autistic. After lots of discussion about whether or not to look for a diagnosis, we decided that a diagnosis would be the right thing for our son.

I spoke with my GP who advised we'd need three months observations from his school before a referral to the umbrella pathway could be made.   

I spoke with the school's SENCO and she said that although she could see some of the characteristics, this doesn't present a barrier to his learning and therefore they wouldn't recommend a referral.

I then went back to the GP who said they couldn't refer without a report from the school.

We have been left in a position of not knowing how to move forward from this.  We have just paid for a private initial assessment and the outcome was that they recommend a full assessment for our son. We're not in a position to pay for this privately and would need to proceed through the NHS. I am speaking with a different GP this week to see if they will refer him with the psychologist's report rather than something from his school.

I would really like your thoughts or similar experiences of difficulties getting referred. We have worked so hard over the years to support our son and we have put in place lots of coping strategies so on the surface it may seem like he is coping but he actually finds lots of everyday things challenging and stressful.  He feels that getting a full assessment and finding out whether or not he is autistic will really help him understand himself.

Thanks in advance for any advice.

Parents

  • Hello,

    Firstly, are you getting him diagnosed so that he can access support at school? Because diagnosis or not, he is still entitled to it. 
    He is quite right. He does need to know, and needs to learn about himself, and a diagnosis will be beneficial. 

    I don’t know why the school cannot help you with this. It’s not their call to say that they don’t recommend it. I have no idea what happened when my daughter school was asked to proved info, because by the time her appointment came round, everything was irrelevant.

    In fact, because the delay was so long, she had experienced a lot of difficulty with school, and after a few meetings she had several measures out in place, had her own profile, and teachers were all made aware, They had also set up a group for ASD girls, and she was invited to attend despite not yet having a diagnosis. Her attendance improved. None of this was mentioned during the assessment, as they were unaware.

    Is he struggling with any aspects of school? It might be wise to write up a report yourself, and hand that to the SEN officer at school, as well as your GP. He’s still young, but once they hit that high school age, things can slip rapidly. Now is a good time to get things underway.

    Regarding private diagnosis, yes it’s costly. I literally used my savings to fund my daughters, because I had no other choice. (NHS failed her badly). I was able to pay in installments. It was money well spent, although I still moan about it, purely because I HAD to pay to right the NHS’s wrongdoings…..

  • in reply to Catlover

    Thanks for your reply. I'm sorry to read about your experience with the NHS, it sounds like your daughter's school have been great putting things in place to help her. Unfortunately our school haven't been at all helpful, it took 9 weeks to even speak to the SENCO...he moves on to high school in September.

    I will speak with the GP on Thursday and decide how to move forward from there.

    Thanks again for replying.

Reply
  • in reply to Catlover

    Thanks for your reply. I'm sorry to read about your experience with the NHS, it sounds like your daughter's school have been great putting things in place to help her. Unfortunately our school haven't been at all helpful, it took 9 weeks to even speak to the SENCO...he moves on to high school in September.

    I will speak with the GP on Thursday and decide how to move forward from there.

    Thanks again for replying.

Children
  • in reply to ThePinkFlamingo

    Its so frustrating the lack of knowledge schools seem to have about how autism presents itself. I'm having the same issue with my daughter only lucky for me at the time she was referred for assessment she'd just started reception and her teacher at the time noted certain behaviours similar to myself. Shes now in year 1 and has begun masking alot of her difficulties so teachers are not necessarily seeing all of the behaviours that can be typical of a child with autism and are failing to support her needs. 

    Even if your sons school doesn't feel certain characteristics demonstrate ASD, they should just list what they are /what behaviours they have noticed and then you can highlight how they do demonstrate ASD.  Lack of funding should not be a reason  not to offer support. 

    I'm guessing  your son doesn't have an SEN support  plan at school? You could try and request for an Educational health care plan from your local authority but again as in my experience they seem reluctant unless school are backing up the request. Its such a failing system for our children's needs.

  • in reply to NAS77

    Thanks for taking the time to reply. I feel that the school don't believe that he could be autistic. His form tutor listed several of his characteristics and said that he didn't feel these demonstrated ASD. I feel they're not educated in the full spectrum of autism and therefore don't have a good understanding of it. The senco also spoke about lack of funding. They just don't seem interested in helping. He will be moving to high school in September and for this I'm grateful. But we need to get things in motion before then, the transition will be hard for him.

    I have read the NICE guidelines so I'm hoping the clinical psychologist's recommendation for assessment will be enough to allow for a referral. If not I'll be going back to the school, again, and demanding more from them.

  • in reply to ThePinkFlamingo

    I was just wondering if it is due to his age why a referral can only be done in this way.  With my daughter (who was 5 at the time) I raised my concerns with GP and they referred to a school age clinic ,who then referred her for assessment, it was not down to the school to initiate the referral.I believe that the school should be able to write a letter highlighting the characteristics they note as traits and this should be enough for your GP to then use as a reason for referral. Autism is a spectrum disorder the severity of symptoms and the way in which they present,as we know vary amongst individuals and therefore  on the basis your son is performing well at school should not restrict him from accessing the right support/ being referred.

    I know guidelines may differ from area to area but as a starting point I would suggest reading the guidelines on NICE with regards to the grounds on which GP should offer a referral. Best of luck to you both