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Too "well behaved" to have Higher functioning ASD..

Gothie

Hello all, this is my first post here but I will try not to ramble.

my son is now nearly 4 and after finally thinking I was getting somewhere with a diagnosis for him the "specialist services" in my area have been less than helpful, I've had speech therapists look horrified at my sons flapping and to and for running and his running in circles, she said and I quote "I've worked in speech therapy for over 20 years and I've NEVER seen a child like this" she advised getting further assessment (this was his first ever speech assessment) and referred me to the child centre, the paediatrician there wasnt particularly helpful, if anything she was very dismissive. In her report she refred him to SEN services claiming he's just got delays and nursery would fix that. She wrote that due to his "well behaved" nature, there's no possibility it's ASD just a learning delay.

I have an aunt whom works in a privately funded SEN school and is astonished at how dissmisive these services are, she works with children and young adults with all sorts of disabilities and disorders, a large amount being autistic in nature so she recognises it clearly whenever she interacts with my son. I also have another aunt who works in a primary school and she is also a SEN teacher assistant type role, she works with similar children too and she recognises the blatent cues and signs and she doesn't know how to help either as I've walked the path I'm supposed to with getting at least a thorough hearing. 

Im im at my wits end, I've had people from all sorts of departments along the way surprised at how well versed on the subject I am, one even said I could probably teach the paediatricians a thing or two, whilst that was flattering I don't think I'm an expert, just an expert in my child's particular ways. But the people who CAN make a difference don't seem to be listening at all. 

I'm also a single parent as his father...well, let's just say he's less than helpful and my son doesn't even want him changing his nappy let alone being able to take him to the park without me. So when I read advice sections that say ask friends and family, well I can't really as they have their own life strains and stresses or just simply don't know or understand my sons ASD.

(so much for not rambling >.<)

any advice or help or even just words of strength would be helpful as i finally feel like I'm lost..

Gothie.

Parents

  • I really can sympathise with you, we have cme across so many stumbling blocks its unreal, my son is 8, hes been in the systen since he was around 2 and a half,  first off we had a real naff peadatrician then our sons senco has been off quite a lot, then my son got a cracking teacher who picked up on lots of things and bascially said hes on the spectrum, i then went into school to show them my war wounds,they get onto cahms, he goes to cahms, they say he needs testing for Asd, then his teacher left the school and moved out the county, then we have a report off a private Ot that says my sons symptoms are indicitave of sensory proccessing disorder,went to see the audiologist who says that 99.9% of children he sees that have hypercussis like my son goes hand in hand with ausitm.

    Then the peadatrician goes on maternity leave, we go and see a cover peadatrician whom says its wrote in my sons notes if his behaviours continued hes get a written diagnoses however he basically said he cant do much and to wait till the normal peadatrician gets back!!!! which of course could be another year, meanwhile my son is not getting the help and support he needs.

    Even with my son constantly threatening to kill himself we get no support what so ever.

    Oh and i have to say the peadatrician was orginally going to diagnose him with high functioning autism and sensory issues depending on what school said, school never got back to her as the senco was off.

    Anyway my point is you will perhaps come across many stumbling blocks,but keep strong. its a well known fact that children on the autism can be like this.

Reply

  • I really can sympathise with you, we have cme across so many stumbling blocks its unreal, my son is 8, hes been in the systen since he was around 2 and a half,  first off we had a real naff peadatrician then our sons senco has been off quite a lot, then my son got a cracking teacher who picked up on lots of things and bascially said hes on the spectrum, i then went into school to show them my war wounds,they get onto cahms, he goes to cahms, they say he needs testing for Asd, then his teacher left the school and moved out the county, then we have a report off a private Ot that says my sons symptoms are indicitave of sensory proccessing disorder,went to see the audiologist who says that 99.9% of children he sees that have hypercussis like my son goes hand in hand with ausitm.

    Then the peadatrician goes on maternity leave, we go and see a cover peadatrician whom says its wrote in my sons notes if his behaviours continued hes get a written diagnoses however he basically said he cant do much and to wait till the normal peadatrician gets back!!!! which of course could be another year, meanwhile my son is not getting the help and support he needs.

    Even with my son constantly threatening to kill himself we get no support what so ever.

    Oh and i have to say the peadatrician was orginally going to diagnose him with high functioning autism and sensory issues depending on what school said, school never got back to her as the senco was off.

    Anyway my point is you will perhaps come across many stumbling blocks,but keep strong. its a well known fact that children on the autism can be like this.

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