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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'm afraid this is very much the problem - those that SHOULD help often aren't listening.

    I read your account of the paediatrician's ill-informed comments in the light of what has already happened to me this evening. I've had a call from an agency paid by NAS asking me to commit a monthly payment to NAS.

    Believing at first they were actually NAS, from the way the phonecaller engaged me, and they way they asked what things I felt NAS did best, and what the could do more, I tried to explain in particular why those at the abler end, both children and adults, suffer because professionals do not adequately understand the visible evidence, and make ignorant statements of this kind.

    Then it gradually dawned on me that I was talking to a fundraiser who neither knew anything about autism or cared. All the stuff about thanking me for my support was leading up to pressure to commit to a monthly payment. They are being paid a large sum of money, she explained, just to canvas contributions.

    Why am I a member of NAS? I've got Asperger's Syndrome. NAS has sent my details to a fund raising agency - they quoted my address and email at me, besides having my nuumber. If that's how cras NAS is, it is hardly surprising the message isn't getting out to anyone else.

    So I fully sympathise with your difficulty. The people out there who should be doing everything to improve understanding of autism just aren't listening, aren't taking any notice.... NAS included.

Reply

  • I'm afraid this is very much the problem - those that SHOULD help often aren't listening.

    I read your account of the paediatrician's ill-informed comments in the light of what has already happened to me this evening. I've had a call from an agency paid by NAS asking me to commit a monthly payment to NAS.

    Believing at first they were actually NAS, from the way the phonecaller engaged me, and they way they asked what things I felt NAS did best, and what the could do more, I tried to explain in particular why those at the abler end, both children and adults, suffer because professionals do not adequately understand the visible evidence, and make ignorant statements of this kind.

    Then it gradually dawned on me that I was talking to a fundraiser who neither knew anything about autism or cared. All the stuff about thanking me for my support was leading up to pressure to commit to a monthly payment. They are being paid a large sum of money, she explained, just to canvas contributions.

    Why am I a member of NAS? I've got Asperger's Syndrome. NAS has sent my details to a fund raising agency - they quoted my address and email at me, besides having my nuumber. If that's how cras NAS is, it is hardly surprising the message isn't getting out to anyone else.

    So I fully sympathise with your difficulty. The people out there who should be doing everything to improve understanding of autism just aren't listening, aren't taking any notice.... NAS included.

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