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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

  • moonriver said:

            With the Autism Act up and running and the fact that Autism now is virtually well understood in the mainstream WHY or WHY are parents coming up against a system that is actually harming childrens life chances.  

    I guess, because Autism is NOT virtually well known in the mainstream. 
    Why? Because the system is so muddled.

    Autism Spectrum Condition was defined decades ago as a Developmental Difference, but there was no Department for Developmental Difference to slot it into; because then you would have to define Difference, which is virtually impossible to do and inadvisable because it brings up the old terms of Normal/Not Normal. And there is of course no such thing as Normal.

    ASC is not a Learning Disability as many of us have above average intelligence and can sustain ourselves in the world as well as any NT.
    ASC is not a Mental Health Condition, though along with a lot of other conditions, mental health problems can arise from the individual trying to cope. 

    So ASC ends up being shunted backwards and forwards between professionals who are not specialists in the condition.
    The connection with the American DSM has confused things even more. Okay, mental health problems can arise from having ASC and anxiety is often present in Asperger's through the stress of coping with the NT world and NT behaviour. But ASC is not at core a mental health condition. It's presence in the DSM indicates to people that it is.

    I think the latest definition in DSM is going to add to peoples' confusion. Its 'Grading' system certainly caused me dis-quiet...
    Two decades ago I began working in NHS Learning Disabilities. The clients I looked after had all been moved from the old psychiatric hospitals/asylums.  Within those Institutions they had been Graded... High or Low Grade.
    Working with them in their beautifully kitted-out newly-built unit, where they were all treated as equal, I observed that whenever the clients had a disagreement with each other, an ultimate put-down was to call the less able opponent 'Low Grade'. 
    Hence my dis-quiet with the DSM's new system. I see this as a step backwards. What sort of society are we that goes back to 'Grading' people?

    This is all very dis-heartening when added to the posts on this site, where people report professionals incorrect interpretations of what ASC is and frequently deny people have it at all. I have recently seen these problems occuring both with a young child and an older man... despite all evidence indicating they each had ASC.
    The system does not work well for old and young alike.        

Reply

  • moonriver said:

            With the Autism Act up and running and the fact that Autism now is virtually well understood in the mainstream WHY or WHY are parents coming up against a system that is actually harming childrens life chances.  

    I guess, because Autism is NOT virtually well known in the mainstream. 
    Why? Because the system is so muddled.

    Autism Spectrum Condition was defined decades ago as a Developmental Difference, but there was no Department for Developmental Difference to slot it into; because then you would have to define Difference, which is virtually impossible to do and inadvisable because it brings up the old terms of Normal/Not Normal. And there is of course no such thing as Normal.

    ASC is not a Learning Disability as many of us have above average intelligence and can sustain ourselves in the world as well as any NT.
    ASC is not a Mental Health Condition, though along with a lot of other conditions, mental health problems can arise from the individual trying to cope. 

    So ASC ends up being shunted backwards and forwards between professionals who are not specialists in the condition.
    The connection with the American DSM has confused things even more. Okay, mental health problems can arise from having ASC and anxiety is often present in Asperger's through the stress of coping with the NT world and NT behaviour. But ASC is not at core a mental health condition. It's presence in the DSM indicates to people that it is.

    I think the latest definition in DSM is going to add to peoples' confusion. Its 'Grading' system certainly caused me dis-quiet...
    Two decades ago I began working in NHS Learning Disabilities. The clients I looked after had all been moved from the old psychiatric hospitals/asylums.  Within those Institutions they had been Graded... High or Low Grade.
    Working with them in their beautifully kitted-out newly-built unit, where they were all treated as equal, I observed that whenever the clients had a disagreement with each other, an ultimate put-down was to call the less able opponent 'Low Grade'. 
    Hence my dis-quiet with the DSM's new system. I see this as a step backwards. What sort of society are we that goes back to 'Grading' people?

    This is all very dis-heartening when added to the posts on this site, where people report professionals incorrect interpretations of what ASC is and frequently deny people have it at all. I have recently seen these problems occuring both with a young child and an older man... despite all evidence indicating they each had ASC.
    The system does not work well for old and young alike.        

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