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Confused by assessment process

frazzledmum

My 4 year old has suspected high functioning autism.  She's had a diagnosis of sensory processing disorder since September (privately diagnosed by an OT, the NHS don't seem to recognise or offer therapy for it in our area), and when we saw the paediatrician for a review appointment earlier this month she said that she strongly suspects high functioning autism.  But this was based on anecdotal evidence from me, and the behaviour my daughter displayed during the appointment - which was with a strange person in a strange place - and there was no formal assessment. 

She's been seen by the Educational Psychologist (who agrees with the autism opinion), but no joy with speech and language therapy who seem to have a huge caseload and she isn't a priority it seems.  We're in the process of the statutory assessment process, supported by her nursery, in the hope of getting a statement before she starts in reception in September.  She already has 1:1 support in nursery, not with a qualified LSA but just with someone who is an extra adult, from what I can gather. 

I'm really confused by the whole process - at what point does the suspected autism become an official diagnosis?  Is there anything I can do to hurry along the SALT assessment beyond driving their receptionist mad with daily phone calls? 

I feel like this is taking over my life a bit, and would appreciate any advice.  Thanks!

  • You're very welcome!  My son does have support at school although it's only temporary at the moment.  We have started the statement process to ensure it's more permanent.  I don't know why it all has to be so hard!!!  Everything says early intervention is the most important thing and yet it's the hardest to get hold of! 

    I would just say, don't panic if the statement isn't in place before she starts school.  If you are happy with the school and they are supportive, you should find a way to make it work until it has been sorted.  It just feels very daunting!

    x

  • Thanks so much for this advice.  I feel like I'm going round in circles at the moment, as having nagged further this afternoon the advice seems to be to submit the statutory assessment without the SALT report and hopefully that may spur them into action.  I suspect that's probably a way to try to keep me happy, and all that will happen is that the statutory assessment request will get bounced back along with a request for a SALT report.

    The paediatrician has written to me and the various professionals (GP, OT, SALT etc) saying she suspects ASD, and the Ed Psych has said his report, based on a meeting with me and the nursery staff plus observing my daughter in nursery should be back next week, so hopefully things might move forward.

    Like you, I've been told that the diagnosis doesn't matter and it's all based on the needs of the individual child, but I too take that with a pinch of salt.  I guess time will tell!  All I know is I've got a very bright little girl who is not going to learn much without additional support, and I desperately want that support to be in place before she starts reception.  So frustrating. 

    I hope you have had success in getting support for your son?  And thanks again for the advice x

     

  • Hi there.  I think you and I have been in a very similar situation.  I have a 5 year old who has high functioning autism.  The consultant confirmed this to us following an appointment where she heard my anecdotal evidence although she has been seeing my son for quite a few years now (due to suspected ASD).

      I imagine that the assessment process varies depending on where you are in the country and also whether or not your child is already being seen by the paediatrician.  The fact that you have an Ed psyc that agrees is really fantastic.  My exereince of SALT is that their caseload is always so big it's hard to get anywhere with them.

    As far as I am aware, it becomes 'official' after a multidisciplinary meeting where they all agree but in some cases, perhaps such as ours, the paediatrician will just say that's what they think. They may not make it 'official' for one reason or another for some time.   If it's what you think and what the doc thinks, don't let a rubber stamp hold you back.

    As far as the statement is concerned, they say it doesn't matter if you have a diagnosis or not as it's based on the childs needs.  I am somewhat suspicious about that.  I can't help but think that for the people sitting in the offices making decisions, it does make a difference.  Will you get a report from your last meeting with the Doc outlining his suspision?  I'm sure this would help.  Don't be downhearted if it gets knocked back at first - that seems to be the norm.

    As for speeding the process up, I've not found a way yet!  I think we're a year or so ahead of you and to be honest, it's a long old road but you'll get there.  As far as daily phone calls go, i do that because it's the only way you feel like you're doing anything.  Otherwise you feel a bit helpless.  As long as it's not massively increasing your stress levels, stick with it.  When it comes down to it, your name will be at the forefront of their mind when it comes to cancelled appointments/report writing etc.

    It sounds like you have the support of nursery and hopefully you are happy with the school your daughter will be going to.  It's a roller coaster and can get all consuming but I find it goes in fits and starts.  Best of luck to you and your family. x