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So frustrated with the system (asd assessment)

4 replies

elliejjtiny · 10/04/2019 18:16

Just to give a bit of background my 4 year old is in reception at school and has been having problems since birth. He was born at term with neonatal sepsis so spent 5 days in nicu. He screamed a lot when he was in there and the nurses couldn't settle him. He didn't smile until 4 months, late meeting other milestones too, especially speech. I've been saying since he was a baby that I thought he had asd. His older brother was diagnosed with aspergers syndrome aged 9 and dh has it too. We've got another son who has sensory processing disorder and 2 others who have hypermobility syndrome and some other issues.

Ds has been under speech therapist, physio and neonatal paediatrician since birth and finally it was agreed that we should start assessment for asd and he saw the community paediatrician in June last year. She took a history, asked for reports from speech therapist and preschool (physio had discharged him by this point and referred him to orthotics for insoles) and said she would see us in 6 months.

Paediatrician left the hospital and so we got given a new one who we saw yesterday. She took a history again, looked at the report from salt and told us the one from preschool was missing and it would be out of date anyway now. So she has asked for a report from the school senco and will see us again in 6-9 months. she also said that he was still very young and might grow out of his problems. She asked if we wanted any support but then said that all the support I asked for requires a diagnosis of asd to access. Thankfully I am able to take him to some support groups and activities as a sibling but support from the children's autism outreach team stops in July as my eldest turns 13 then.

I don't know what to do. The school senco keeps asking where we are with the diagnosis because she wants to get him more support at school. Everything seems to be a massive battle and there are so many things that I want for him that I can't get with no diagnosis.

OP posts:
BlankTimes · 11/04/2019 00:30

Flowers Flowers Flowers
So sorry you're being fobbed off and bounced around, it's disgusting with the weight of evidence you already have. I understand your frustration.

Could Senco write you a letter, copy to your GP along the lines of 'We could give this child XYX support immediately but need a dx before we can start.

Could you then see your GP with said letter (that he already has so should be familiar with) and ask them to write to the new paed, mention all of the instances of autism and co-morbids in the immediate family, father and siblings, asking the new paed to fast-track your son's dx appt?

If that comes to naught, see your MP.

Sirzy · 11/04/2019 06:17

The senco should be providing support on a needs basis not a diagnosis basis so I would be wary that she is using these delays as a way of passing the buck.

Hopefully she gets a report to the peads quickly to help move the diangnosis along

elliejjtiny · 11/04/2019 15:38

Thankyou. I'll talk to the senco when the dc are back at school. He already gets band 3 funding but senco wants to apply for an ehcp for him. She said the lea are more likely to agree if she can give them evidence that his problems are permanent and an official diagnosis of asd will do that.

OP posts:
openupmyeagereyes · 11/04/2019 17:30

I agree with Sirzy, the school should be providing support based on need not a diagnosis. Have they outlined what support they believe he needs?

My ds got SEND funding for his last term at nursery. The specialist teacher told us that this was a good indication that the EHCP would be granted.

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